A newsletter of the Pulmonary Hypertension Association 0 Summer 2010 0 Volume 19 No. 3
P a t h l i g h t
The REVEAL Registry: Examining PAH and Exploring Solutions H i g h l i g h t s he first U.S. registry of pulmonary McGoon, Chair of the REVEAL Steering PHenomenal Lives 3 arterial hypertension (PAH) patients Committee and Professor of Medicine PH and Adoption 4 Twas created by the National at the Mayo Clinic in Rochester, Minn. Our Journeys 6 Institutes of Health in the early 1980s, “As compared to the NIH Registry Meet the Doctor 12 with 187 patients enrolled. For years, that followed only untreated idiopathic much of what we’ve known about PAH and inherited PAH patients, the REVEAL Health Matters 13 has been linked to the information Registry should provide additional Ask a PH Specialist 13 gleaned from that registry, but as information because of the large “Helpful Hints” 17 research in the field expands, our number of patients studied and the Research Corner 20 knowledge continues to grow. five-year follow-up of treated patients,” The Registry to Evaluate explains Dr. Carol Vreim, former Advancing the Cause 21 Early and Long Term PAH Disease Project Officer for the NIH Registry and International Updates 24 Management (REVEAL) is a long- current Advisor to the Medical Services Advocacy in Action 28 term observational study designed to Department at PHA. Support Groups 30 update the PAH knowledge base by According to Dr. McGoon, “The Special Events 32 examining current clinical decision- Registry is designed to: achieve a making and following patients for at broader view of the demographics and Community Classroom 36 least five years. The Registry recently clinical presentation of PAH; determine PHA on the Road 38 completed patient enrollment of more how different variables of PAH (such than 3,500 patients and is moving as the presence of scleroderma, PHenomenal Youth 41 into the final, follow-up phase. “The liver disease, treatment choices, Family PHocus 44 goals of the REVEAL Registry are to and severity of pulmonary arterial come to a clearer understanding of hypertension) affect patient outcomes; how exactly PAH presents in patients, identify why different patients have how doctors approach the disease different disease progressions; identify and their patients, and how the illness short and long term clinical predictors;
behaves over time,” says Dr. Michael story continued on page 18 M essage from ph a’s board c h a i r Carl Hicks Most people would of Mt. Kilimanjaro. And many probably call me members of our community pretty tough. After joined them in spirit by taking all, I was a U.S. Army part in Unity Walks across Airborne Ranger and the country. It was with deep served in some fairly gratitude that I watched the difficult places. I Path to a Cure campaign unfold, knew not only how to knowing how many community marshal my soldiers, members exceeded their own but contain my emotions. I had to be expectations, whether it was tough — that was my job. climbing 19,341 feet to the top Then pulmonary hypertension came of Africa, walking in solidarity into my life. Anyone who has been at a Unity Walk or toiling through Carl in flight with PHA’s Amanda Butts reading Pathlight for a while or heard me a six-minute walk test as the one ever had to know about. My deepest speak at a PHA event, knows the story climbers made their ascent. gratitude to those who plan these of my beautiful daughter Meaghan’s You may not know that I pilot a miraculous events. battle with — and ultimate loss to — plane, but my little Cessna Skywagon There are so many others who give PH. I’m not too tough to tell you that I has allowed me to get to know many their heart, soul and time to making our have cried a million tears for her and for wonderful patients and caregivers. When community what it is by serving on our all she went through, never giving up. I can, I steer my way to support group Board of Trustees, writing for Pathlight, And not only for Meaghan, because my meetings and special events. Talk about helping out before and during our involvement with PHA has brought so deep gratitude! Support group leaders International Conference, talking to the many magnificent people into my life. do so much to end the isolation and media and legislators, and supporting Many of whom are still with us fighting increase the knowledge of support group the work of PHA in myriad other ways. A the fight for their lives, and others who participants. And those participants are deep bow to each and every one of you. no longer are. Their loss caused much something else, too. They share their Although this is the last letter I’ll sadness, but I remember them for their deepest fears and feelings and help be writing as Chair of PHA, you haven’t grace and courage under fire. each other in ways too numerous to heard the last of me. The range of But sadness isn’t the only emotion count. emotions that brought me to PHA and I feel. I also feel deep gratitude. My And special events ... There’s spurred my involvement remain and life has been enriched in ways large a reason we call them special. Our always will. I will be with you every step and small by being a part of the small, patients and their family members work of the way. w but mighty, PH community. This year so hard to create fun and meaningful we saw three medical professionals events, raise funds for PHA and spread scale great heights, reaching the top the word about this disease we wish no
p a t h l i g h t: a user’s guide
PHenomenal Health Advancing Community PHenomenal Family Lives Matters the Cause Classroom Youth PHocus
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2 www.PHAssociation.org PATHLIGHT SUMMER 2010 PH e n o m e n a l L i v e s
Uncle Draws Inspiration from Nieces Who “Lived a Little Harder”
s. Dern, these were and a heavy heart.” And he good kids.” These says, “there’s a marathon in my “Mwords have stayed future. For Monica, for Sara and with me since I first heard from for everyone else who can’t run Tony Chroussis in February because of PH.” about the loss to PH of his On race day — May 16 — two beloved nieces, Sara and Tony didn’t have “the personal Monica. Tony’s brother Paul belief that my leg and/or and his wife Karen were the physical conditioning would parents of these two young allow me to complete this women who were diagnosed journey.” But a number of in the spring of 2005 and who coincidences that day — passed away much too soon; including hearing a song that Monica, left, and Sara, right, inspired their Sara at age 22 in late 2007, uncle to do what he hadn’t thought possible. reminded him of Monica as and Monica at age 25 in late he arrived at the start line and 2008. seeing butterflies as he ran along the As a child, Monica already knew what she wanted to Rappahannock River to remind him of Sara — led Tony be: a doctor or a veterinarian. She applied to medical school to believe that he would run the whole way or they would after her diagnosis and was accepted, but had to drop out “carry me off on a stretcher.” No need for a stretcher, because of her condition. That didn’t stop her though, and Tony completed the race. she had nearly earned her Master’s degree in education and This was, he says, an was engaged to be married when she died. “epic moment” in his life. Sara was different. As a child she said she wanted to “I wasn’t there to win or be a butterfly, and Tony says he still has the butterfly pin set any records or to work her boyfriend made out of pasta for everyone who came to miracles. I will use the next her memorial service. Her boyfriend intended to propose to race to raise some cash. I’m her over the New Year’s holiday, but she died on New Year’s on a mission.” Eve. In that spirit, Tony Tony continues to draw inspiration from these two has begun to put the steps lovely young women. “They were diagnosed, and instead of into place to organize one stopping, they lived a little harder. … I can’t begin to tell you or more PHA Fun Runs in how much inspiration I draw from their unwillingness to let memory of Sara and Monica. this condition cripple them,” he says. Tony and his brother and But Tony wasn’t writing only to share this very sad sister-in-law know how story. He wrote because he wanted to honor his nieces’ important it is to help make memories in tangible ways. others aware of pulmonary A few months after Sara and Monica were diagnosed, a hypertension, and with his disc in Tony’s back herniated and he’s had several surgeries nieces as his inspiration, we since that time. But, he told me, following their example, know that Tony will do that he “refused to allow that injury to define who I am, and how and more. w I will live my life.” Tony, a former Marine with dreams of running a marathon, ran in the Marine Corps Historic Half By Adrienne Dern in mid-May “with my purple PH shirt, my purple wristband PHA Senior Vice President
www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 3 4 PHENOMENAL LIVES
A D adoptionisright foryour family, the PHspecialist. conversationwith your partner and worthdiscussing candidina questionsaredifficult but andschool functions? These getinvolved intheir activities keepupwith anolder child and learningtocrawl orwalk? Will youhave theenergy to ortoddler? Will youbeable tokeep pace withchild a child’slife. Will youbephysically able tolift aninfant implicationsofyour illness during different stages ina factorstoconsider. First, youmust think about the consideringadoption, there aremany health-related impossible. illnessmakes theadoption process more difficult butnot solelybased ontheir diagnosis. Thetruth is,chronic willbedenied theopportunity tobeanadoptive parent reasons.Many people with chronic illness worry that they receivearefrom couples whocannot conceive formedical lookingtocomplete their family. Many ofthecalls I receiveI calls dailyona basis from people whoare ByVenessa Nunn, PHCaregiver TheAdoption Process: Some First Steps personaldecision. PHpatient andher medical team about this intensely notmeant substituteasa fordiscussiona between a theadoption process. Theperspectives offered here are HannahLahmeyer share some oftheir experiences with Servicesprofessional Venessa Nunn andPHpatient includingfoster parenting andadoption. Below, Family instable health consider alternatives topregnancy, themembrace newatake onfamily life. Some patients withtheloss, turning tofamily, friends andhumor tohelp pregnancywith this condition. Many find ways ofcoping memberswhodon’t fully understand thehealth risks of surroundedbypregnant friends andwell-meaning family becomesourcea ofstress foryoung women with PH, “thehardest thing about PH.” Family planning can patientcalls theknowledge that shecan’t havechild a n o i t p O n a s a n o i t p o d A : d o o h t n e r a P n o p U g n i v i G t o N www.PHA ssociation.org forHealth andFamily Services inthestate ofKentucky, anadoptions andfoster care worker forthe Cabinet itposes tomother andchild. Onerecently married patientsavoid becoming pregnant duetothe risks octorsrecommend that pulmonary hypertension Onceyou’ve determined that Whenpulmonarya hypertension patient is 2010 SUMMER PATHLIGHT A ByHannah Lahmeyer, PHPatient MyAdoption Success Story since1996. careworker bytheCabinet forHealth andFamily Services patient.Shehas been employed asanadoption andfoster makethis decision. stronglyabout, seek outresources that canhelp you easyprocess. However, ifthis issomething that youfeel ofadoption andfoster care resources byregion. ( agency.TheNational Foster CareAdoption & Directory placetobegin isbycalling your state’s public adoption Again,these options vary from state tostate, sothebest adoptionsrequire fees forattorneys andagency services. adoptionandinternational adoption. Most ofthese childcare agency, independent adoption, relative Financialassistance varies from state tostate. availableforchildren adopted through thestate agency. costsuntil heorsheturns 18.College assistance isalso subsidyandMedicaida card forthe child’s healthcare $1,000tocover attorney fees, along withmonthly a InKentucky, thestate agency pays adoptive families adoptionscanoffer thebenefit offinancial assistance. isright foryour family. Depending onwhere youlive, state child. confirmingthat youare physically capable ofraising a usuallyrequire speciala letter from their PHdoctor examfrom your doctor isrequired, andPHpatients you’reinstable health tobegin theprocess. physicalA adoptionprocess requires that youpresent proof that Ourdaughter wasabout toenter theworld. After getting www.childwelfare.gov/nfcad couple,myhusband Joeandreceived I phonea call. 1:30t p.m. onourfirst Christmas marriedasa VenessaNunn isthespouse andcaregiver PHtoa Choosingadoption isnotaneasy decision oran Otheroptions include adoption through privatea Nextyoumust determine thetype ofadoption that theokay from herbirth mother, wedrove to thehospital. shortA 30minutes after we heardherbirth mother wasinlabor, foundI myselfintheoperating room, watching my daughter’sbirth viaC-section. ampleasedI tosaythat amnow Ithe proud mother of a 6-month-olda baby girl. Wenamed her AnnaliseAndrea, which means “favored warrior.” ) is a searchableisa) database story continued on next page PHENOMENAL LIVES 5
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, including the the including , Chapter 14 – 14 Chapter , Vera M. Wall Center Center Wall M. Vera , , Pulmonary Services, Services, Pulmonary , ; PH Helpline: 1-800-748-7274 , Mayo Clinic, and and Clinic, Mayo , , for updating portions of of portions updating for , Chapter 3 – Who Gets PH? Gets Who – 3 Chapter Treatments: PH – 4 Chapter , Study Coordinator, PAH PAH Coordinator, Study , , PH patient, for confirming the the confirming for patient, PH , Fortunately, in my case my in my case Fortunately, blocks, stumbling these Despite , PH patient, for reviewing sections of of sections reviewing for patient, PH , , Intermountain Medical Center, Center, Medical Intermountain , . , call 301-565-3004 or visit visit or 301-565-3004 call , I strongly recommend young PHers PHers young recommend I strongly for option one as adoption consider Chapter 5 – PH Drugs PH – 5 Chapter decided that if the child made it through through it made child the if that decided We had adopt. we would pregnancy, the to transferred paperwork care foster our agency. an adoption not did hypertension pulmonary only The process. this affect negatively to I required was that step additional my PH doctor from a was letter take be physically I would that stating The of a child. care of taking capable expense the are of adoption drawbacks which process, of the length the and or more. years two take can
w To order a copy of the latest revision of the the of revision latest the of copy a order To both members of PHA’s Board of Trustees and and Trustees of Board PHA’s of members both the in assisting for Council, Leadership Scientific updates; text various of review medical RN BA, Latham, Lian Pressure Blood High Other The PH: – 2 Chapter MT Wheeler, Lisa for University, Vanderbilt at Study Genetics of portions updating FNP-C Kingman, Martha for Center, Medical SW Texas of University of portions updating Basics; The ANP MSN, RN, Liu, Juliana for Stanford, at Disease Vascular Pulmonary for updating chart; medications Patty Paula Resources – 14 Chapter Morrison Carol in addresses web of accuracy Resources Michael McGoon, MD McGoon, Michael MD Elliott, • • • • • • Guide Survival www.PHAssociation.org/SurvivalGuide • starting a family. Although she looks nothing like me or like nothing looks she Although a family. starting is our Annalise that minds in our no doubt there’s Joe, daughter. SUMMER 2010 PATHLIGHT update; Hannah and Joe with their daughter Annalise Survival Guide Guide Survival ’s Third Edition, summer summer Edition, Third ’s , for her wisdom, guidance and and guidance wisdom, her for , was first written in 1998 by Gail Gail by 1998 in written first was , Liu Center for Pulmonary Pulmonary for Center Liu , page includes includes Pulmonary Pulmonary previous Survival Guide Survival from Survival Guide Survival Gail Boyer Hayes Boyer Gail every during assistance Hypertension at Harbor-UCLA Medical Center, for for Center, Medical Harbor-UCLA at Hypertension Editor; Medical as role his Ron Oudiz, MD Oudiz, Ron Survival Guide Survival is pleased to unveil an an unveil to pleased is our of version updated
. This book serves as a as serves book This . For the the For The The While Christmas day was a was day Christmas While
• • continued
Boyer Hayes, a PH patient and advocate. This go-to text text go-to This advocate. and patient PH a Hayes, Boyer a by updated regularly now is families and patients for volunteers, patient and professionals medical of team Ron Dr. Editor Medical from leadership and support with Oudiz.
flagship publication, publication, flagship Survival Patient’s A Hypertension: Guide patients, for guide soup-to-nuts diagnosis on information offering wisdom the and treatment and newly The PH. with live to how on revised the on chapters the to updates PH, of classification and diagnosis resources. patient and medications to: goes you” “thank well-deserved a revision, 2010 PHA A Patient’s Survival Guide Edition of A Patient’s Yields New PH Community Collaboration whirlwind, our adoption story began began story adoption our whirlwind, in afternoon that than earlier much I diagnosed was 2009. December as hypertension pulmonary with with women because and a child, pregnancy, against advised PH are never I would up knowing I grew of my own. to a child birth give and Joe wedding, our after Soon to become we wanted I decided the into months Five parents. foster through a met woman we process, pregnancy a crisis runs who church us of a told woman The center. center pregnancy the at client She baby. her to adopt someone for looking was who as risk, high very was pregnancy the us that told also We prostitution. and in drugs involved was mother the story
PATHLIGHT SUMMER 2010 www.PHAssociation.org Not Giving Up on Parenthood: Adoption as an Option
6 PHENOMENAL LIVES
n a m e s e e R e l r e M y b D n o i t o m E . s v n o i t c n u F betweeneach patient andtheir heart.” ofourcollaboration andthe visualization oftheconnection organicfunction oftheheart. Itbegins with theintroduction ofHeart isanabstract rendering andrepresentation ofthe Astheprogram explains, “ActFunction:– I Thefirst portion arrangement;themusic began, andthe dancers danced. hadn’teven started. ... outinthemain lobby. Watching them wore meout, andwe ByhamTheater p.m.at1 ... The dancers were stretching openingweekend. ...OnFriday, February 19,wemet atthe Maria’svision hadcreated. ... inmythroat andtears welled inmyeyessaw asIwhat graceful,emotional andfilled with passion. lumpA grew andMaria counted outthe beats. ...Their movements were firstrehearsal together. frequently;wemetatthe café. Eventually, wemetfor our we,thepatients, metcafé.ata Thedancers practiced more preparationsreally gotunderway. Thedancers practiced; wearegoing through now. ...After that first meeting, PAHpatients felt, what wehadgone through andwhat meetingswastosee how weastransplant patients and Septemberattheballet studio. ...The intent ofthose month. discussthepossibility ofhaving balleta inFebruary heart— (PAH)patients, andthey metwith several patients to transplantpatients andpulmonary arterial hypertension healtha issue. They decided toperform balleta about heart BodiographyContemporary Ballet, about doing balleta about Center,approached Maria Caruso, Artistic Director of TransplantProgram attheUniversity ofPittsburgh Medical DirectoroftheHeart Failure Dr.Dennis McNamara, saidparticipate ballet.ina vs.Emotion balletcalled honortoparticipate ina O www.PHA ssociation.org itwasmyprivilege and February19-20, 2010, uringtheweekend of s y e n r u o J r u Whenthecurtain opened, weweretableaux ina madeI fliers forthe event anddistributed them before We,thepatients, watched asthedancers danced Thefirst planning meeting forthe ballet wasin OurJourneys . And.yes, I feelisolated andalone with this disease. Visit HEART,Function followingtwostories intheir entirety, browse more than 200 arestories that bring thePHcommunity together andshine asbeacons forthose who Merle (far right) during a performance. Photo courtesy Eric Rose. Eric courtesy Photo performance. a during right) (far Merle www.PHAssociation.org/OurJourneys 2010 SUMMER PATHLIGHT cherishforever. thankI allthose whomade itpossible. wheelsanother— awareness raising moment. surprisedwith theweight ofthecart even though itwason othersupplies uptothelobby. Hesaid hewould andwas manandasked ifhewould pull mycart ofoxygen and andheaded forthe lobby tomeet myfamily. sawyoungIa stageright. gatheredI upmycoat andused oxygen tanks overtheweekend. ... accomplishmentandthe awareness that waspresented Tearsflowed asweshared ourappreciation forthe toshare ourfeelings; ittruly wasanemotional time. opportunitytoaskquestions. Each ofushadchancea casemeds. ... I haveI such asmyFlolan weightofmyoxygen tank andall the other just-in-case stuff thatsegment, Nicole dragged Maggie around, showing the whenMaggie stood ontopofNicole. Then forthe closing of Maggie,showed thepressure thathave I felt inmychest patients).Ittruly wasemotional. Mydancers, Nicole and (transplantpatients) andsome arestill going through (PAH dancersshowed thestruggle some ofushave gone through eachpatient satatthe edge ofthestage while their beingadded. whiteonstage, representing thenew heart prior toblood removaloftheold heart, andlednew adancer dressed in Thedoctor then ledthe dancer offstage, representing the strugglehearta would have prior toandduring thesurgery. demonstratedopen heart surgery, dancera mimicked the itself.”Astransplant surgeon Dr.Robert Kormos visually priortoheart transplantation aswell astheoperation Thiswasphenomenala event, timea inmylife will I Attheend ofthe show that first night, weexited Aftereach performance, theaudience hadthe Whenitcame time toshow thepatients’ emotions, Journeys orsubmit your own. TM andexplainedI mystruggle. strugglePAHpatients gothrough, anexcellent presentation ofthe wereNicole andMaggie, whodid ourheart’s function. Mydancers dancerfeworadancers toexpress depicted“the physical preparation , mymixed, meds andmyjust-in- ActII,titled “Emotion,” Eachofuseither hada
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PHENOMENAL LIVES 7 ur Journeys O w es, I do have to take my to take I es, do have . I teach piano privately privately piano . I teach Y PH Helpline: 1-800-748-7274 ou see, the disease changed her as her changed disease the ou see, Y PAH has also made me become more more me become made also has PAH use. I have discovered PAH to be, in a way, in a be, way, to PAH discovered I have use. a having I started in disguise. a blessing I am and my mom, with relationship better relieved disease The of her. afraid no longer my music in pressure constant me of her career. me It freed family. my whole It changed well. gave and self-pressure impossible the from patient and kind to be more me a reason myself. with I others. and myself with Honest honest. in expressing confident more become have . I have nothing to lose. I have also started started also I have to lose. . nothing I have
Aspire Music Program Music Aspire Aspire Most importantly, having PAH has pushed me to pushed has PAH having importantly, Most questions many me to ask forced has PAH Having I see myself as a strong young woman, a sister, a sister, woman, young as a strong I myself see my thoughts and feelings to others. It has brought me closer me closer brought It has to others. feelings and my thoughts the to remember time the take who — those to my friends thing.” heart weird “some say just not and name disease’s met I have better. the for relationships ended also It has have they up to me to say come have who of friends friends of source the been has Praying me daily. for praying been in find may others which in my journey, strength and peace themselves. or in praying yoga meditating, true. come them make and my dreams for reach actually dream a lifelong I fulfilled to Indianapolis, moving Since children. school inner-city for program a music of creating called It’s inner- at a local program of an afterschool as part free for who pianists school high talented have I also school. city dimension another It adds students. the to teach volunteer as a musician. to my career of meaning young a regular just if I not were would I normally that brave and me strong made has disease This woman. single like my dreams to fulfill try and there out to get enough creating performing regularly again. ... The passion is back. I am so is back. passion The ... again. regularly performing that noticed I have others. with my music to share hungry in my a depth new added has journey this experiencing ... playing. piano I don’t a and performer. a teacher a friend, a daughter, person.” as a “sick myself see I am before I But am a person hours. four every medications I don’t or that I fragile am not mean not It does a patient. a sense having for I am so grateful disease. the about worry feels one when is possible Anything contentment. of true emotionally. and physically great SUMMER 2010 PATHLIGHT ork City City ork Y my six-minute walk test. Every time I go in to do time Every test. walk my six-minute ou can’t run!” ... run!” ou can’t
Y run Emotionally, it’s been quite a journey as well. When When as well. a journey quite been it’s Emotionally, Thanks to the amazing care I have received at received I have care amazing to the Thanks January 2009 brought many drastic changes to my changes drastic many brought 2009 January I was not prepared for my career to end in five minutes minutes in five to end my career for prepared I not was
ince my PAH diagnosis two years years two diagnosis my PAH ince journey an incredible been it’s ago, I physically. and emotionally both
S A Pianist’s Story by Minju Choi
accepted PAH as part of my life, I decided to put it to good it to good to put I decided of my life, as part PAH accepted the extreme limits physically and emotionally. But once I once But emotionally. and physically limits extreme the Musicians thrive on stress and on pushing themselves to themselves on pushing and on stress thrive Musicians a pianist, I have learned to live on stress my whole life. life. my whole on stress to live learned I have a pianist, months. I was also angry. I questioned many things. As things. many I questioned angry. I also was months. hear? hear? me up for ate Fear I scared. was diagnosed, I first was could could you test, a is WALK “This to hear, I have now test, walk the hospital, I am now known as the patient who asked if I asked who patient as the I known am now hospital, at home, I have been feeling like a new person. At the a person. new like feeling been I have at home, Columbia and to the constant love and support I receive I receive support and love constant to the and Columbia the city was too tough for a PAH patient. a patient. for PAH tough too was city the support system that I could only get in my hometown. Life in Life in my hometown. get only I could that system support Indianapolis, to be near my family. I needed a certain kind of kind a certain I needed family. my near be to Indianapolis, for more than 10 years, I moved back to my hometown, to my hometown, back I moved 10 years, than more for
the Columbia Hospital. After having lived in New in New lived having After Hospital. Columbia the life. First, I started seeing Dr. Erika Berman Rosenzweig at Rosenzweig Berman Erika Dr. seeing I started First, life. who I was anymore. I anymore. who was depressed. ... It was like losing my identity. I didn’t know know I didn’t my identity. losing like It was ... depressed. asking myself, “What the heck is wrong with me?” I was me?” with is wrong heck the “What myself, asking it on my work ethic; I must have lost my passion. I kept my passion. lost have I must ethic; it on my work a few years before. Until the day I was diagnosed, I blamed I blamed I diagnosed, day was the Until before. a years few able to practice for hours the way I used to be able to only to only to be able I way used the hours for to practice able relieve me of stressful responsibilities. Physically, I wasn’t I wasn’t Physically, responsibilities. me of stressful relieve at a doctor’s office. However, canceling these concerts did concerts these canceling However, office. at a doctor’s years. years. everything I had mysteriously experienced for the past seven seven past the for experienced I mysteriously had everything shutting down on me. The website explained in clear words words in clear explained website The on me. down shutting on the website, I froze in my chair. ... I felt the whole world world whole the I ... felt in my chair. I froze website, on the As I was reading all the information information the all As I reading was website in order to be better informed. informed. to be better in order website news. I was also told to visit PHA’s PHA’s to visit told I also was news. stress. I was so discouraged by this by this I so discouraged was stress. competitions in order to relieve my to relieve in order competitions my concert engagements and piano piano and engagements my concert told me that I needed to cancel all all to cancel I needed me that told When I was first diagnosed, the doctor doctor the diagnosed, I first was When the piano since I was four years old. old. years I four was since piano the am a classical pianist and have played played have and pianist a classical am
PATHLIGHT SUMMER 2010 www.PHAssociation.org
www.PHAssociation.org PATHLIGHT SUMMER 2010 PHENOMENAL LIVES 9
to join join to w to tap into into tap to “It’s very easy for for easy very “It’s PH Helpline: 1-800-748-7274 That’s why some of the the of some why That’s ~ Ellen ~
Make a list of the things you cannot give up and and up give cannot you things the of list a Make require colleges and schools high Most As Nessie in Kentucky writes, writes, Kentucky in Nessie As Visit own? your of question a to answers for Looking cannot be changed. You make yourself the priority. the yourself make You changed. be cannot overtime chores, household (like up give can you what will you time much how decide Then etc). work, at list your of top the sure Make task. each to devote that’s And night. each sleep of hours eight includes bed. in bills paying not sleep, graduation a as projects service perform to students project. learning service a be can You requirement. learning service the of charge in is who out Find or five or four make and neighborhood your in projects you for perform can students that tasks CONCRETE ten period. six-week a over By Emma Bonanomi PHA Patient Outreach and Services Manager someone to say ‘take care of yourself,’ but if they don’t don’t they if but yourself,’ of care ‘take say to someone understand.” don’t they it, live caregivers fellow from come tips stress-busting best ideas your Email them!). love who patients PH the (and to boat same the in caregivers over-booked and Pam for spread to continue We’ll [email protected]. possible only not are rejuvenation and rest that word the life. daily caregiver’s PH every in necessary but www.PHAssociation.org/DiscussionBoards visit or members, community PHA of wisdom collective the www.PHAssociation.org/EmailGroups/#Caregiver group. email Caregiver PHA the SUMMER 2010 PATHLIGHT ou Move Too Fast! Y “I am having a lot lot a having am “I Anastasia joined PHA in June as the Kerry Bardorf Family Support Program Associate. She Associate. Program Support Family Bardorf Kerry as the in June PHA joined Anastasia in degree a Master’s with in May Baltimore, of Maryland, University the from graduated Organization. Community and Management in Nonprofit a concentration with Work Social an AmeriCorps Allies, at Public initiatives program managing experience recent With and support family planning and development, leadership youth facilitates that program to comes Anastasia Md., in Towson, Center Medical Joseph at St. programs education with be working will Anastasia At PHA, enthusiasm. and experience with position new this education and support current enhance and to expand adults and of children caregivers ~ Kristie ~ ~ Nessie Nessie ~
~ Alice Alice ~
Online community members rallied together to to together rallied members community Online
Make appointments for “me time.” Go do things that that things do Go time.” “me for appointments Make way same the them, schedule and do, to want you that something appointment, doctor’s a schedule you’d Following a healthy diet helps. Lots of veggies and and veggies of Lots helps. diet healthy a Following you Whenever stuff. processed much too Not fruits. to time enough take to try person, bath a you’re if can, can naps power Also, bath. uninterrupted quiet, a take thing. good a be I stop for 10 minutes at a park or other beauty spot, spot, beauty other or park a at minutes 10 for stop I mp3 my on book a to listen or music soothing on turn player. I visit the chiropractor often and make sure I keep all all keep I sure make and often chiropractor the visit I not try I appointments. doctor’s and hair regular my I but silly, sound might This day. my over-schedule to that all With day. per tasks two or one only schedule anything schedule to not try I week, the during on goes weekends. the for Welcome, SupportAnastasia Program Raftopoulos, Associate! Kerry Bardorf Family
offerings for families of PH patients. To learn more or to get involved with the Kerry Bardorf Family Support Program, Program, Support Family Bardorf Kerry the with involved or to get more To learn of PH patients. families for offerings x800. or 301-565-3004 at [email protected] Anastasia contact
n April, PH caregiver Pam Adams posted a call for help help for call a posted Adams Pam caregiver PH April, n Board: Discussion online PHA’s on of difficulty lately with my stress level being too high. … high. too being level stress my with lately difficulty of » » » »
What I need are some suggestions for things that could could that things for suggestions some are need I What I things of lot A life. person’s busy a in practice into put be yourself, on spend to hours have you assume to seem read one and children three having addition, In don’t. I which else everyone of care take to myself trained have I sick, start.” to where know don’t almost I So first. reducing for ideas of dozens offered and Pam support favorites: few a are Here behind. falling without stress I Slow Down, Caregiver, Discussion Board Users Offer Stress ReductionTips » » » »
PATHLIGHT SUMMER 2010 www.PHAssociation.org
10 PHENOMENAL LIVES
I n o i s n e t r e p y H y r a n o m l u P h t i w c i l b u P g n i o G pump case like a model on a runway, walking from one side This could’ve happened to any one of them. home. I was their age. I went to their school. I lived their life. box of tissues. It was at that point that I realized I had hit together. One of the students walked up and handed me a take over for a few minutes while I pulled myself back I actually started crying so hard I had to stop and let Pam breathe.” A few gasps echoed around the room. minutes — I had to stop every couple feet; I just could not shook my head and laughed. “It would take me at least 45 A few of them chimed in, “Five minutes, ten minutes….” I does it take you to walk from, say, building A to building B?” I would ask my student audience questions like, “How long year at Marywood University. So, since I knew the area well, September 2006, I was actually just beginning sophomore that come as a result. When I was finally diagnosed in of symptoms and all the confusion, fear and frustration to be one of the most rewarding experiences I’ve ever had. say. But, once I got started, I just couldn’t stop. It turned out my heart out to them with no real idea of what I wanted to good times and the bad. I was open, honest and just poured has been like since being labeled “handicapped” — the coaster leading up to my diagnosis and shared what my life me. Through laughter and tears, I relived the three-year roller treatment options. Then she turned the spotlight over to of pulmonary hypertension, its statistics, symptoms and Specialist, got things started with an in-depth explanation Marywood University. Pam Rotella, a Cardio-Pulmonary Nurse full of soon-to-graduate Physician Assistant students at This past April, I shared my entire PH journey with a room girl who would never say two words in class, voluntarily. and a fighting spirit we never knew we had in us. start over, emerging with new-found strength the pieces and make a new pattern. We get to very core of our being. All we can do is pick up dreams, shattering emotions, reshaping the first tile and just keeps on going, squashing left untouched. A PH diagnosis bulldozes that and sets a ripple effect in motion, no tile is outside force knocks over that first domino — are all set up perfectly. Suddenly, an our strengths and weaknesses, our priorities — who we are, what we want to accomplish, row of dominoes. Every aspect of our lives t’s amazing how much our lives parallel a www.PHA ssociation.org It wasn’t all tears, though. I showed off my home-made When I got into the most painful, lowest moments, I chronicled all the misdiagnoses, the escalation Change isn’t always bad. I used to be the quiet Start Somewhere Start 2010 SUMMER PATHLIGHT fingerprints. everyone around us. Our paths in life are as unique as our be an educator. By sharing a piece of ourselves, we teach I’ve learned is that you don’t need a bachelor’s degree to strength, perseverance and incredible courage. One thing But we have a wonderfully unique story to tell, one of delving into the most intimate part of our lives is not easy. acceptance process. eyes. I consider that to be a very important step in my own and curiosity — not the shameful reflection in my own did, my gaze was met with ones of sympathy, acceptance afraid to look up and see their reaction, but when I finally chest and the CADD Legacy part of me still felt like a freak with a tube coming out of my down a little to show them my catheter site, I cried. A huge of high school juniors and seniors. When I pulled my shirt out a year and a half ago. My first audience was made up students and art therapy majors since I first began speaking incredible feeling. life-threatening illness puts it in a whole new light.” It was an hearing firsthand from someone who lives with a chronic, we’ve seen all year. We read about stuff all the time but us your story.” “This was absolutely the best presentation all the girls said, “Thank you.” “It was so brave of you to tell too. Viagra applauded my success. A little crack about being a girl on to buy v-neck shirts again, every pair of hands in that room from the center of my chest to the side, how exciting it was sense of confidence from having my central line moved from the girls. When I talked about gaining a new-found of the room to the other to a chorus of “ooohs and ahhhs” By Katie Tobias, PH Patient PH Tobias, Katie By Getting up in front of a room full of strangers and I’ve talked to high school biology classes, nursing Afterwards, in the inevitable line for the ladies room, TM helped to lighten the mood and get some laughs w Reach Out Reach ® brick attached to me. I was One Step at a Time a at Step One i n t e r n a t i o n a l International Faces of PH: Braden’s Story n e w s othing could have prepared my husband and me for
the devastating news we received back in September S E V I L L A N E M O N E H P N2003. That is when our pediatrician told us that the mysterious illness plaguing our then five-year-old son Braden was a devastating disease with no known cure called pulmonary hypertension. Like most people, we had never heard of this illness before receiving the diagnosis. Braden had been suffering from unexplained symptoms for about a year prior to diagnosis. What we first thought to be asthma, we now understood to be a life- threatening illness, and we were scared for our son’s life. When Braden was diagnosed, he began treatment with sildenafil. We started making trips from our home in New Brunswick, Canada, to Sick Children’s Hospital in Toronto, Ontario, at least twice a year (this is about 18 Braden, far right, with his family hours from our home) so that he could be followed by the prepared the boys to expect to be gone at least a year. only pediatric PH specialist in Eastern Canada, Dr. Tilman We settled just outside of Toronto. On August 27, Humpl. Braden did very well on sildenafil for the first two Braden was officially placed on the transplant list, and years following diagnosis. we began what we thought would be a very long waiting In October 2006, his health took a turn for the process. We enrolled all three boys in school and started worse, and we found ourselves back in Toronto for another to settle into our new home as best as we could. cardiac catheterization. At that time, we decided to add We were shocked when, just a few weeks after we TracleerTM to his treatment. Lung transplant was also arrived, we received the call for transplant on September discussed; however, once on TracleerTM, Braden again 22. It felt completely surreal, and we were all in a state of made progress and his health improved. He was able to shock as we headed to the hospital and waited for word as continue with these oral therapies until January 2008 to whether or not the transplant was a “go.” Many times when we had no other choice but to begin FlolanTM therapy. there are “false alarms” and the organs are not suitable Braden again stabilized, and just as he had in the past, he for transplant. As we waited at the hospital, we continued accepted this challenge and learned to cope with life on to question whether or not we were making the right FlolanTM. Once again, his health improved. decision. Part of me wanted to scoop Braden up and run That all changed in May 2009 when Braden out of the hospital and take my chances with this horrible developed a serious case of pneumonia. We had been disease. At least we knew what we were facing right now noticing a slight decline in his health, but this was the last even if we didn’t know for how long. straw. We were very frightened as he spent two weeks Braden, on the other hand, was confident in his in the hospital in Saint John, and we knew that once he decision and, after the initial shock, he kept reassuring was strong enough, it was time to go back to Toronto and me that he was ready and this was right. At 3 a.m on discuss our final option — lung transplant. September 23, he was wheeled into surgery. He kept the In July 2009 we packed our three boys in the van brave face right up until they began to wheel him away. (Braden’s younger brothers are 10-year-old twins Jarrett Tears welled up in his eyes as he told the nurse, “Take and Rylan) and made the 18-hour drive to Toronto for a care of my parents — they are probably going to cry a lot!” week-long battery of tests that would determine whether and then he was gone. or not Braden was a candidate for lung transplant and As the doors closed, my husband and I both broke whether or not our family was psychologically prepared for down, wondering if this would be the last time we would all that a transplant entailed. see our son. The next 10 hours were agonizing. Finally, at When we found out he qualified, we quickly made 1 p.m., the surgeons emerged to tell us the surgery was preparations to move our family to Toronto. So much a success. The lungs were a good match, the surgery had uncertainty now faced us. We did not know whether we gone off without complications and we would see Braden were leaving home for six months, a year or more. The soon. Just a few hours later, we were seated by our son in
wait time for pediatric lung transplant is uncertain, and we story continued ON Page 14
www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 11 M e e t t h e D o c t o r
Meet Dr. John Newman: A Pioneer in the PH Field r. John Newman is the Elsa S. Hanigan as is possible. Hope is the most Professor of Pulmonary Medicine at important feature of living with pulmonary DVanderbilt University in Nashville, hypertension or any life-threatening Tenn. He has been working in the field disease. of pulmonary hypertension (PH) for more than 30 years and continues to make How did you become involved with PHA? strides in PH research. Dr. Newman has I came to the first PHA International PH a longstanding interest in the physiology Conference in 1994 at Stone Mountain and genetics of pulmonary hypertension, PHENOMENAL LIVES Park in Ga. at the request of one of my and he is an active member of PHA. Dr. patients and because my colleague, Newman assumed the position of Chair Jim Loyd, and I wanted to get involved. of PHA’s Scientific Leadership Council at We were so impressed with the families PHA’s 9th International PH Conference and and the organization. Also, we had been Scientific Sessions, and he recently took the in the National Institutes of Health (NIH) Registry and all time to talk about his involvement in the fight against PH. the doctors in the Registry were very excited about the organization. That was the first time we drew blood with You have worked in various settings throughout your Greg Elliott for genetic studies — the beginning of what medical career. How did you become interested in would become the Research Room at PHA’s Conferences. pulmonary hypertension?
I became interested in PH when I was a medical resident You have just stepped into the role of Chair of PHA’s in 1972 and had a patient with PPH, as it was called Scientific Leadership Council (SLC). What are your plans then. The disease was so rare and poorly understood and goals in this position? that everyone spoke about it in hushed tones, especially As Chair of the SLC, my goal is to continue to provide because there was no treatment. She was a typical service for PAH patients and families, help promote patient, young, otherwise healthy, with no other disease research, give expertise for advocacy. I would like to features. When I went to Denver, Colorado, for my expand the research portfolio, to work with NIH on Pulmonary Fellowship, I became interested in high altitude translational PH programs and work more with the pulmonary hypertension and started working on the pediatric pulmonary hypertension community. pulmonary circulation in the laboratory. I also have worked on other problems in the pulmonary circulation such as You are a professor of Pulmonary Medicine at Vanderbilt oxygen toxicity and exercise. University. What advice do you have for new practitioners entering the field of PH? What advances in PH treatment have you seen since you first started practicing? Work hard, take your work, but not yourself, seriously.
When I started there was no effective treatment at all. Thank you for speaking with us. Any parting thoughts? Then calcium channel blockers were discovered, and Ivan McMurtry showed they reversed hypoxic pulmonary So much good has been done by the PHA and by the vasoconstriction. They were then tried in PPH and shown health workers interested in the problem. I really think we to work in some patients. This was in 1980. Since then, will see a breakthrough in treatment in the next several all the important discoveries have been made, so I years that will convert PAH to a chronic disease that predated effective disease treatment and have witnessed allows patients to lead a normal life. That is my hope and all the advances we now have. expectation. w
What is the most important advice you give PH patients? Interview conducted by Priscilla Davis PHA Medical Services Program Associate I try not to give advice. I do want people to live as normally
12 www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 H e a l t h M a t t e r s A s k a P H s P e c i a l i s t
Since I was diagnosed with PH, my hair of treatment disruption could lead to clinical Q: has been thinning. I’ve heard that some worsening. PH medications can cause hair loss as a side Because hair loss has not previously effect. Is this true? been reported with PAH medications and each issue, Pathlight because other causes of hair loss are features a question from Hair loss, or alopecia, can affect common, an evaluation for other causes of our PH community and A:individuals of all ages and can be related hair loss should be considered before any its answer from a PH to a large number of medical conditions. thought is given to changing PAH therapy. This specialist. Send us your Although hair loss can be considered a might include a limited work-up involving tests questions, keeping in mind “cosmetic” problem, hair loss can also signal for thyroid problems or anemia, consideration doctors can only address an underlying medical condition that needs of one of the common causes of hair loss general topics that are to be addressed. Potential causes include listed below and evaluation for any specific not specific to individuals. an inherited tendency towards hair loss, hair conditions suggested by the medical history. Send submissions to loss related to a stressful event, and medical In addition to these medical conditions, Christa at AskaDoc@ conditions such as infection, inflammatory mechanical traction, chemical hair treatments PHAssociation.org or call skin conditions, connective tissue diseases, and “trichotillomania (nervous, self-induced 301-565-3004 x770. thyroid disorders, anemia or a nutritional hair pulling)” can also contribute to hair loss deficiency. and should be considered. Certain medications can also contribute The most common cause of hair loss to hair loss, and I am sometimes asked in the overall population is “androgenetic whether a specific PAH medication could alopecia,” also known as male pattern be causing hair loss. Hair loss is not a baldness. This inherited tendency towards frequent side effect of medications other hair loss is caused by an increased sensitivity than chemotherapeutic medications, to androgens, and it can affect both men but it is occasionally reported with many and women. Women with this hereditary commonly used medications, including condition tend to develop hair thinning that antihypertensives, anticoagulants, cholesterol is more diffuse than men, and they do not lowering medications and others. usually develop complete baldness. Onset Hair loss has not been reported for any is gradual, with progression typically noticed of the currently approved PAH medications, over a period of years. There are no curative including prostacyclins (epoprostenol, therapies, but medications exist (topical treprostinil, iloprost), endothelin antagonists minoxidil and oral finasteride) that can lead (ambrisentan, bosentan, sitaxsentan) and to some improvement in hair growth, at least phosphodiesterase-type-5 inhibitors (sildenafil, for some patients. Of note, finasteride is tadalafil). However, this does not mean that only approved in men, and both finasteride in any given individual that these medications and minoxidil are antihypertensives (blood could not be the cause of hair loss. pressure medications) that may not be Unfortunately, there is no reliable test appropriate for use in some PAH patients. available to determine whether a medication Another condition that should be is causing hair loss. Recommendations are considered in patients who have recently been often to consider stopping the medication, if ill or under stress is a “telogen effluvium.” possible, to see if the hair loss resolves. This A telogen effluvium is a temporary hair loss is usually impossible with PAH, as any type story continued on next page
PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 13 Ask a PH Specialist continued from previous page hair falls out and another hair grows to that can occur after any major take its place. A serious stressor can stressor, such as pregnancy, trigger many hair follicles to move into weight loss, major illness, surgery the telogen phase early. This leads to or a traumatic psychological hair loss several months later when the event. Hair loss typically peaks hair follicle begins producing a new hair. at three to four months after the There are no specific therapies for this stressful event. When uncertainty condition, but it is usually reversible with exists, this can be tested for by time. “pulling” on two to three dozen In summary, hair loss is a common hairs with a firm tug. Under condition that is likely to affect many HEALTH MATTERS normal circumstances, fewer individuals with PAH. In some cases no than five hairs will be pulled out by their root (broken specific intervention is required, but in other cases a hairs don’t count). In contrast, during a telogen effluvium more thorough evaluation is needed, and this should be many more hairs will be released. This type of hair loss discussed in more detail with a physician. w occurs when the hair growth/rest cycle is disrupted after a stressful event. Hair normally grows for a period of two Answered by Kelly M. Chin, MD, Associate Director, Pulmonary to three years, followed by a three to four month resting Hypertension Program, UT Southwestern Medical Center, Dallas, phase known as “telogen.” At the end of telogen, the Texas
Braden’s story continued from page 11 the Critical Care Unit. Over the next few days, he began Demystify “PH-Speak” with Our an absolutely amazing recovery! Slowly, the many tubes and IVs that covered his body began to be removed, and New Acronym Decoder! on the second day, when they removed the breathing tube, Braden opened his eyes and uttered his first Acronyms and shorthand are commonly used words, “I told you I could do it!” by members of the pulmonary hypertension We are now almost eight months post transplant, community, but no one is born knowing the and Braden is doing things he only dreamed of in the difference between your PAP and your PCP! past. In January, he put on skates and played ice Newcomers and old-timers alike can use this hockey for the first time in his life! He is able to run and alphabetical list of PH-related abbreviations, play with his brothers and enjoy the things in life that adapted from a resource created by PHA so many of us take for granted every day. In April, we Australia, to brush up on the “PH-speak” you run returned to our home in New Brunswick, and Braden was across in our online communities, at support treated to a hero’s welcome with his entire school lining group meetings and at the doctor’s office. the street to welcome him back. Every time I look at him, I know that no matter how long we have, this was the www.PHAssociation.org/Acronyms best decision we could have made and each and every day we have is an absolute gift. We are forever grateful to the family who gave so selflessly in order to give our 6MWT six-minute walk test son a second chance at life and change our family’s life forever. w ABG arterial blood gas To learn more about Braden’s Journey, you may visit ACHD adult congenital heart disease his “Caring Bridge” page at www.caringbridge.org/visit/ bradengendron for stories and updates. AF atrial fibrillation
By Jennifer Gendron And more online... Mother and Caregiver of Braden Gendron
14 www.PHAssociation.org PATHLIGHT SUMMER 2010 One Patient’s Perspective: A Second Opinion May Be Just What the Doctor Ordered S R E T T A M H T L A E H he chair is stiff but conforms to my want to ask her all the questions formulating in body; the air has a musty, masculine my head. As I take a breath to speak, a nurse Tsmell to it, as though a man with calls out my name from a door leading into the lots of cologne just walked right by doctor’s office. you. I look at my mom and smile a When pulmonary hypertension was in little. Then I look around the rest of the its infancy, patients were told to go home and room. Patients of all ages file in: the enjoy what time they had left with their families. woman in a wheelchair on oxygen, the Today, many doctors around the world know gentleman with a fanny pack around his about pulmonary hypertension and treat it waist and me — the 20-year-old with based on what they know and what they think is nothing noticeably wrong. But a secret best for their patents. However, could another lies wrapped around my calf, a CADD doctor have a different opinion or a different Legacy® pump surrounded by CobanTM to hold it in place. approach to both your medical health and your quality of As I sit there next to my mom, I wait for the nurse to call life? This is just one question that we, as patients, may us back like I have done most of my life (or at least it need to ask ourselves. Receiving a second opinion might seems like I have). I think about the PH community and answer this question and many others. the patients and dedicated doctors who pledge their lives Over the years of living with PH, I have noticed to treatment of their patient population. that patients’ quality of life has increased as medicine All of a sudden an odd phrase pops in my head. has progressed. With this in mind, I feel that in later “What if?” I ask myself. “What if I was treated by another years, patients have put our quality of life on hold or on doctor? Would he or she have a different perspective the “back burner” for fear of losing the fight with PH. on my health? Would I still have to take so many pills? Well, now that modern science and medical miracles Could I be on a smaller pump? Would they have me are happening, we no longer have to do this. I believe on oxygen 24 hours a day, seven days a week?” My we must all ask questions and work with our medical head suddenly fills with these questions. I become professionals to receive the best treatment possible. w overwhelmed by the possibilities of what could happen if I got a second opinion. I quickly turn to my mom; I By Camille Frede, PH Patient, Age 20
Template Letters Galore: Help Create New Resources for the PH Community
elp us expand our template letter collection by sending us letters you have used to successfully Happeal an insurance decision, gain prior authorization or help a patient access their treatment. For more information or to submit a letter, contact Margaret at [email protected] or 301-565-3004 x773 or visit: www.PHAssociation.org/Patients/Insurance/FileClaim/Templates
Welcome, Meghan Tammaro, Executive Programs Coordinator!
As the Executive Programs Coordinator, Meghan helps support the work of PHA’s President. Meghan serves as the primary support for PHA’s Board of Trustees. She also maintains PHA’s historical archives and works with the President, coordinating logistics and various projects. Meghan is a May 2010 graduate of Lehigh University where she earned a Bachelor’s degree in International Relations. You can reach Meghan by email at [email protected] or by phone at 301-565-3004 x801.
www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 15 16 HEALTH MATTERS
atPHA’s 9 experiencesduring thekeynote address medicalprofessionals spoke about their spring2010 PHA’s Frantz,marking theculmination of hertime onthemountain. withusabout herwork with patients and inJune. Recently, Jessica Lazar talked symptomsofPHthat mypatients deal with every day. ideaofraising awareness andtemporarily experiencing the hisidea toclimb Mt.Kilimanjaro, wasIawestruck atthe ofPHafter losing younga patient. When Raytold meabout temporarilygave himself PH.Hedid this toraise awareness climbedtheGrand Tetons into thehigh altitude and ThiswasDr. Ray Benza’s brainchild. Twoyears agohe Howdidyou become involved inclimbing Mt.Kilimanjaro? openthedoor tosomany options forpatients. ofmedications oral,— inhaled andsubcutaneous which— complicatedadvanced therapy toentirely newclassifications toyou? Whatadvancements inthefield ofPHaremost exciting forthis disease. raisingawareness about PH.Sheremarkable isa advocate nurseisa bytrade andhas been active inhercommunity Now,sheisfour years outoftransplant anddoing great. She freeforfive years, shebecame eligible forlunga transplant. treatedsuccessfully forher cancer. After shewas cancer- transplant.Shebegan combination therapy andwas also diagnosisofbreast cancer, shewas not eligible forlunga advancedPHtherapy foreight years, andbecause ofher Onepatient whostands outwomantomeisa whowas on Haveyouhad any PHcases that stand out? individualswas—inspiring tome. personalconnection with themsuch — positive, resilient alwayssopositive. Getting toknow them andbuilding a challengetoovercome with their conditions, butthey were inlove with these patients. They hadsuch tremendous a patientswere myfavorite population towork with; fellI wheremetIDr. Srinivas Murali. Heart failure andPH Inpatientfloors atAllegheny General Hospital inPittsburgh, inPH? Whatinitially sparked your interest PA Lazar, Jessica O Meet Cure: a for Climbing N Dr.RayBenza andDr. Robert PA,summited Mt.Kilimanjaro with Februaryn 26,2010, Jessica Lazar, www.PHA ssociation.org t m o r f s w e PathCuretoa Elevenyears agobeganI working ontheCardiology Itisremarkably exciting tohave gone from one th International PHConference Pathlight campaign (see , p.10)., Allthree h k r o w t e n e 2010 SUMMER PATHLIGHT Program Associate Program Membership Medical PHA Wheat, Rachel by conducted Interview yourjourney, asitdidfor me. goalandpurposea canmake remarkable a difference in makeittothetop, despite being sosick. Having hope, a BenzaandDr. Franz take that picture without me.”did I thoughtI tomyself, “I’ve gottoget upthere; won’tI letDr. Itwould have been soeasy togive upatthat moment, but negativitywascontagious, groupasa ofclimbers gave up. theground right below thesummit, moaning inpain. That atthetop ofthe mountain, andalsoI saw people lying on andsaying, “Iknowcan, Iknow Ican.” I could I seepeople thinkingpositive thoughts, singing BobMarley inmyhead knewIthought ifI negatively, couldn’tI keep going. startedI behindandwas separated from thedoctors. Atthat moment passingout, with themountain guide bymyside. gotI whichneededI tokeep going. Onsummit night startedI climbersmadehuge a difference inkeeping mepositive, oneofmypatient’s families. Having thenetwork offellow wasIable tomonitor using thepulse oximeter donated by expected.I Myoxygen saturation wasat70percent, which myshoes. expectedI that, butbecameI much sicker than developPH.knewIwould I beshort ofbreath even tying Priortoclimbing Mt.Kilimanjaro, knewIwould I temporarily Anythingelse you’d like toshare with Kilimanjaroreinforced that forme. inhavebetter a quality oflife. Whatexperienced I onMt. who,despite everything else, find something tobelieve Neverunderestimate thepower ofpositive thinking. Patients patientsdemonstrate tomeevery daythey— inspire me. succeed.Thepower ofpositive thinking issomething that my teammembers, madebig adifference inhelping meto tothink only positive thoughts. That, along with mypositive couldn’ttake another step. madeI the decision letanynegative thoughts gothrough myhead, I mountain.Fortunately, bouncedI back, butifI theguides planned toevacuate meoffthe wayupthemountain, becameI sosick that experiencebrought that home tome.Onmy forthepower ofone’s mind; mymountain yourself.Itgavewhole mea newappreciation wholedifferent thing when youexperience it itconceptually before theclimb, butit’s a patientslive withdaily ona basis. understoodI Theclimb hasmade meappreciate what my Howhasthe climb impacted your PHpractice? w
Pathlight readers? HEALTH MATTERS 17
PH Helpline: 1-800-748-7274 program as well as PHA’s as PHA’s as well program resource network ph e h
Wear cotton, loose-fitting clothing. Wear lightweight lightweight Wear clothing. loose-fitting cotton, Wear to sandals. or switch shoes and socks outdoors. — a fan even with off Cool or a damp site pulse the at wrist on your ice Place skin your Cool or neck. forehead on your washcloth washcloth. or damp a mister with closed blinds your keep and conditioning air Use air temperatures, at higher Even day. the during air, of the out humidity the takes conditioning air have don’t If you to breathe. it easier making home. or friend’s or library go to a mall conditioning, “10 Things to Do to Stay Cool on Hot and Humid Days” Days” Humid and Hot on Cool Stay to Do to Things “10 the by created Do” to Things “10 of series a in one is serve to Committee Education Network Resource PH inspired was series This patients. PH for resource a as Child Your You, When Do to Things “10 original the by Pulmonary with Diagnosed is Love You Someone or Housten- Traci by 2007 in written Hypertension,” Education Network Resource PH the of MS, RN, Harris, Committee. 7. 8. 9. By Traci Stewart, RN, MSN University of Iowa Hospital and Clinics SUMMER 2010 10. Building Medical Education in PH in Education Medical Building ints” from t d i s c l a i m e r h PATHLIGHT f u l p “ H e l Research Program and research partnerships. Priscilla earned her Bachelor’s degree in degree Bachelor’s her earned Priscilla partnerships. research and Program Research be can She in 2009. University Towson from Education Health Community and School x776. at 301-565-3004 or by phone at [email protected] by email reached As Medical Services Program Associate, Priscilla is responsible for continuing to build PHA’s PHA’s build to continuing for responsible is Priscilla Associate, Program Services Medical As of the enhancement the through community healthcare of the members with relationship benefits of member value the to increase works Priscilla we offer. services and programs also Priscilla constituents. Network PH Resource and Researchers and PH Clinicians for the on coordinating focuses We encourage readers to discuss their healthcare with their doctors. This newsletter is only intended This with newsletter their doctors. to their readers healthcare We discuss encourage which matters, health personal on advice medical provide to not and PH/PAH on information provide to as taken actions readers’ for responsible be not will PHA physician. a from directly obtained be should newsletter. in this contained of information interpretation of their a result
Remember that chronic illness interferes with your your with interferes illness chronic that Remember by down cools body The heat. tolerate to ability sweating. and rate breathing rate, heart increasing to heat response body’s the alter can Medications down. to cool ability and sure to make summer before doctor to your Talk your Monitor best. is at its condition health your weight have if you doctor your call and symptoms or headaches lightheadedness, or increased loss to be need may intake fluid and pills Water nausea. more producing and heat in the are you if adjusted sweat. outside Plan reports. to weather attention Pay and temperatures forecasted the around activities index. heat to a inside activities exercise outdoor your Move in early errands Run conditioning. air with location to avoid Be sure afternoon. in the or late day the car in a parked or rest sit Never temperatures. peak soar. can temperatures where or enclosure Dip in a pool. Lounge or shower. bath a cool Take water. in a of cool tub feet your shade. instant for hat or floppy an umbrella Carry
Welcome, Priscilla Davis, Medical Services Program Associate! 1. 2. 3. 4. 5. 6. 10 Things to Do to Stay Cool on Hot and Humid Days
PATHLIGHT SUMMER 2010 www.PHAssociation.org
story continued from page 1 predominance in the U.S. of females with PAH. Third, and refine the medical community’s ability to treat the study shows a high prevalence of recreational drug patients with PAH.” Dr. McGoon also points out that use and co-morbidities associated with PAH. Each of “the Registry is unique because it has the capability to these findings has important consequences for clinical capture information about how physicians are diagnosing management of the disease, future research efforts and PAH; specifically, whether decision-making is based on patient and provider education. robust clinical information.” Furthermore, the study is exploring whether even For people currently living with PAH, this study has a minor elevation in pulmonary capillary wedge pressure the potential to be incredibly helpful. A large amount of (PCWP) may have significant effects on a person’s health valuable data about clinical markers, treatment options and should be considered when prescribing treatment.
HEALTH MATTERS and demographic information will be available to patients Differences between pediatric and adult patients were and their doctors when the study is completed, making also found and should be studied further so a better treatment and management much more evidence-based. understanding can be achieved. Additionally, registry studies like this are different from The eventual goal of REVEAL is to better typical clinical studies because there is no specific understand the clinical course of PAH, determine which treatment being tested, no placebo, and they are not treatments produce the best outcomes for patients designed to test a specific hypothesis. Rather, a registry with different forms of the disease, and facilitate early like REVEAL is designed to enable formulation of new symptom recognition and referral to treatment centers hypotheses about the disease and its treatment. This familiar with PAH. Hopefully, this new knowledge means that researchers are able to observe PAH in base will provide information that will help inform the the real world, as opposed to the sometimes contrived decisions of clinicians who treat individuals with PAH double-blind clinical trial study environment. and lead to better outcomes for all PAH patients. Patients in REVEAL were enrolled in the Registry Funding for the REVEAL Registry is provided by Actelion based on clinical criteria, as defined by the World Health Pharmaceuticals US, Inc. w Organization. Upon enrollment, the more than 3,500
patients in the registry were interviewed about their References: medical history and a review of their medical record was Badesch DB, Raskob GE, Elliott CG, Krichman AM, Farber HW, Frost conducted. Fifty-four academic and community centers AE, Barst RJ, Benza RL, Liou TG, Turner M, Giles S, Feldkircher K, Miller DP, McGoon MD. “Pulmonary arterial hypertension: participate in the Registry. baseline characteristics from the REVEAL Registry.” Chest. 2010 Early findings indicate several interesting and Feb;137(2):376-87. Epub 2009 Oct 16. useful results. First, there remains a long time period McGoon MD, Krichman A, Farber HW, Barst RJ, Raskob GE, Liou TG, Miller DP, Feldkircher K, Giles S. “Design of the REVEAL Registry between symptom presentation to a confirmed diagnosis for US patients with pulmonary arterial hypertension.” Mayo Clinic and referral to a treatment center. Second, the Proceedings. 2008 Aug;83(8):923-31. study’s early results detected an apparently increasing McGoon, Michael. Personal Interview. April 27, 2010.
Welcome, David Burke, MD, Vice President, Medical & Patient Education!
David Burke, MD, joins PHA as Vice President, Medical and Patient Education. David is responsible for overseeing the medical education team — Medical Services, Meetings and Conference Planning, and Web Services. David has extensive experience in medical education, patient and community education, and health promotion and marketing. He has served as Assistant Professor of Medicine at the University of Pittsburgh, School of Medicine; Medical Director of Shoals Treatment Center, Inc.; and Associate Anesthesiologist & Partner at Anesthesia Medical Consultants, LLC. Just prior to joining PHA, David served as President and Medical Director at Arlington Integrative Health, LLC. He received his Doctorate in Medicine from the University of Virginia, School of Medicine, and completed his Post-Doctorate Residency at the University of Pittsburgh Medical Centers. David can be reached by email at [email protected] or by phone at 301-565-3004 x778.
18 www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 PHA Establishes Robyn Barst Pediatric Research Fund
recently announced the establishment patient outcomes and quality of life for children PHA of the Robyn Barst Pediatric Research with pulmonary hypertension. S R E T T A M H T L A E H Fund, following a $215,000 donation from Dr. Barst, a pioneer in the field of pediatric Dr. Robyn Barst. PHA’s hope is to establish PH research and clinical care, has served on an endowed research fund for pediatric PH PHA’s Board of Trustees and is a past Chair of research, and Dr. Barst’s generous donation the Scientific Leadership Council. In 2008, she is one step toward achieving that goal. received the PHA Award of Excellence in PAH In the coming months, PHA will consider Care. She served as Director of the Pulmonary recommendations from our Scientific Hypertension Center at Columbia University Leadership Council, working with Dr. Barst, on how best to in New York, N.Y., from 1982-2008 and is Professor support researchers who are actively working to improve Emeritus of Pediatrics at Columbia University. w
PHA Continues Expanding Education for Medical Professionals m e d i c a l p rofessionals s the field of PH expands, so too does the need professionals can partner with PHA to for education for those members of the medical design a continuing medical education Acommunity on the front-lines, who are charged with activity that meets their medical community’s educational making accurate and early diagnoses and providing the needs concerning pulmonary arterial hypertension. The best care possible to their patients facing the challenges program committee has identified five topics, four program of living with PH. PHA is meeting that need by expanding formats and more than 50 PH experts to participate as our medical educational programming in 2010 through faculty for these programs. Medical professionals wishing the Medical Education Fund, as well as our latest medical to request a program can log on to PHA’s website and education initiative called PHA Medical Education On- choose their preferred topic, speaker, format, date and Demand. location, and PHA will bring the education to them. Planning for the Medical Education Fund programs Programs of the PHA Medical Education Fund is well under way for 2010. With the 30-City Medical are supported by unrestricted educational grants from Education Program, PHA visits cities remote from larger Platinum-level sponsors Actelion Pharmaceuticals pulmonary hypertension centers across the United States, and Gilead Sciences and Silver-level sponsors Pfizer presenting information on the diagnosis and management and United Therapeutics. The PHA Medical Education of PAH to health professionals who do not have regular On-Demand program is supported by an unrestricted access to comprehensive sessions on pulmonary educational grant from Actelion. hypertension. Medical professionals can learn more about each of The PHA Preceptorship Program facilitates direct these programs, view up-to-date schedules or register for education and training of medical professionals. Led by an upcoming event by visiting experienced pulmonary hypertension specialists in clinical www.PHAssociation.org/MedicalEducationFund and settings, this program instructs front-line clinicians in the www.PHAssociation.org/OnDemand w highest quality of care for PAH patients. Through PHA Medical Education On-Demand, medical By Christa Donald, PHA Associate Director of Medical Services
Welcome, Suzanne Flood, Marketing & Communications Associate! As PHA’s Marketing & Communications Associate, Suzanne oversees marketing and promotional efforts for a number of PHA events including the PH Resource Network Symposium, PHA on the Road and the biennial International PH Conference and Scientific Sessions. Before joining PHA, Suzanne volunteered as the public relations director of Teen Scene Magazine and worked as a medical documentation assistant at HomeCare Concepts, Inc., in New York. She graduated from York College of Pennsylvania with a B.A. in Public Relations and Mass Communications. Suzanne can be reached by email at [email protected] or by phone at 301-565-3004 x768.
PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 19 20 HEALTH MATTERS
R E normal cells that make up the blood vessels of lungs, the expression of selected candidate genes in different and her team are planning to either inhibit or stimulate Rajkumar. to prevent these genes from causing PAH,” says Dr. PAH. In the future, we may be able to develop new drugs are manipulating are important in the development of look like PAH cells, we will conclude that the genes we changes in the behavior of normal cells so that they cells from the lungs of patients with PAH. “If we see normal cells causes them to behave like abnormal whether changing the expression of these genes in PAH. Through her research, she is working to determine stage one that may be central to the development of Rajkumar and her team study four genes identified in PAH,” explains Dr. Rajkumar. many genes with abnormal expression in patients with pulmonary fibrosis), and normal volunteers. We found associated with another lung disease (idiopathic patients with PAH, patients with pulmonary hypertension the expression of all these genes in the lungs of codes for 30,000 genes. In stage one, we measured of pulmonary arterial hypertension (PAH). “Our DNA as a two-stage study to understand the pathogenesis of Pulmonary Arterial Hypertension,” was designed treatment for pulmonary hypertension.” for more specific therapy and uncover new targets for hypertension will afford the opportunity to stratify patients understanding of the genetic mechanisms of pulmonary pulmonary hypertension,” Dr. Rajkumar says. “A better answers to unknown genetic etiologies involving cause, piqued my curiosity and prompted me to find along with our poor understanding of its underlying hypertension and ways to improve treatment. toward a better understanding of the cause of pulmonary Fellowship Award, Dr. Rajkumar has been working the PHA/American Heart Association Post-Doctoral is one of those researchers. As a 2009 recipient of www.PHA ssociation.org H P f o s e s u a C e h t s e n i m a x E r a m u k : j e a r R u C i h a t a r v o e f R g . n r i D h c r a e s e R c r a e s e Dr. Revathi Rajkumar at the University of Pittsburgh exciting new ventures with a fresh crop of researchers. ach year, PHA’s research program embarks upon With the knowledge gained so far, Dr. Rajkumar The project is now in stage two, in which Dr. Her research project, titled “Genetic Mechanisms “The severity and complexity of this disease, h r e n r o c 2010 SUMMER PATHLIGHT www.PHAssociation.org/Research research grant recipients, go to independently reviewed cutting-edge research programs. supported 44 promising researchers through three the American Heart Association (AHA). PHA has already Institute (NHLBI), American Thoracic Society (ATS) and partnerships with the National Heart, Lung and Blood more than $9 million for PH research by leveraging a decade, PHA’s Research Program has committed researchers such as Dr. Rajkumar. In just a little under that I am passionate about.” but will also give me the freedom to carry out research only prepare me to work as an independent researcher sponsors for the PHA postdoctoral award that will not this complex disease. I am grateful to PHA and all of its our long-term goal — better diagnosis and treatment for optimistic that with continued funding we will achieve hypertension research, Dr. Rajkumar says, “I feel very explains. more fully its role and the development of PAH,” she endothelial cells and lung fibroblast cells to understand genes in other cell types such as pulmonary artery “We are currently manipulating the expression of these normal pulmonary artery smooth muscle cells (PASMCs). and leads to features such as excessive proliferation in replicates the findings of their stage one microarray study research have confirmed that at least one gene secondary effect of disease.” that this gene is a primary mediator of PAH, rather than a According to Dr. Rajkumar, “These results will suggest and concordant downstream gene expression changes. cellular proliferation, alterations in signaling pathways for development of PAH-like characteristics such as endothelial cells (PAECs) and fibroblast cells, and look pulmonary artery smooth muscle cells (PASMCs), PHA Medical Services Program Associate Program Services Medical PHA Davis Priscilla By To learn more about PHA’s research program and PHA is proud to support the exceptional work of Looking toward the future of pulmonary So far, the outcomes of Dr. Rajkumar’s extensive
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elpline: 1-800-748-7274 Helpline: PH
A d v a n c i n g t h e c a u s e Y oung Son Inspires Legacy Gift to PHA
ince Daniel Torres’ birth, he has had to overcome obstacles that most young boys have not had to face. SWhen his mother, Martha Gonzalez, was four months pregnant, she knew her son would be born with a heart defect. Two days after he was born on December 3, 2005, Daniel underwent open heart surgery at Columbia Presbyterian Hospital, and his heart was successfully repaired. However, a few days later, he was diagnosed with the rare incurable disease “Biliary Atresia,” a form of liver cirrhosis in infants. Daniel had a liver transplant when he was six months old at the Children’s Hospital of Philadelphia. “After Daniel’s recovery, our family was finally beginning to get back to normal,” Martha says. “We went back to school, back to our jobs and thought that the worst was behind us.” But at a routine scheduled checkup with his Torres-Gonzalez Family cardiologist, Martha and her family heard the diagnosis that would change their lives: Daniel had pulmonary hypertension. “As a mother I was devastated to hear again the word ‘incurable,’” Martha says. “It didn’t seem possible that after all we had been through, our son would have to face another challenge.” “We are dreamers, Daniel was just one year old. After the diagnosis Daniel’s doctor connected the Torres-Gonzalez family with PHA. so we hope and pray “Becoming a member of PHA was the best thing that has happened to us,” Martha for a cure for Daniel,” says. “We were able to have access to information on treatments, and we were able to hear the stories of others who were living with this disease. It gave us hope.” Martha says. “But we Now four years old, Daniel is responding well to treatment, and Martha, along are realistic too. We with the rest of the family (Daniel’s father Carlos, brother Sergio and sister Mia), has continued to stay active with PHA. To honor their commitment to an organization that need to make change helped them in their time of need, the Torres-Gonzalez family joined PHA’s Legacy happen and that is why of Hope Society and included PHA as a beneficiary of their life insurance. “We are dreamers, so we hope and pray for a cure for Daniel,” Martha says. “But we are realistic we support PHA.” too. We need to make change happen and that is why we support PHA.” w
By Jillian McCabe PHA Associate Director of Development
ou can help secure a better future for the community of hope by including PHA in your estate plans. In addition to Yleaving a legacy for PH patients in the future, you can create income streams and realize tax benefits during your lifetime through creative estate planning. For more information about planned giving and PHA’s Legacy of Hope Society, email [email protected] or call Jillian at 301-565-3004 x767.
PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 21 22 ADVANCING THE CAUSE
their monthly donations for PHA and the PH community. sister, Maribeth S. McCarthy. gift is in memory of her brother, Daniel Sheridan, and her 100 100 PHA PHA’s www.PHA ssociation.org Patient’s Mom Raises Funds for PH (And Has Fun, Too!) Fun, B Has (And PH for Funds Raises Mom Patient’s works as a custodian — decided to name PHA as the the schools — East Hanover Elementary, where Jane for PHA programs and services. donations to PHA. In total, these events raised $1,528 aides were able to wear blue jeans to school in return for March, April and May 2010. Faculty, staff and classroom were held in five different schools on select days in participating school, Jane’s superintendent, as well as the principal of each to participate — they really like to dress down!” “because it is the easiest way for the teachers and staff events. “I decided to do a jeans day,” Jane says, involved in hosting a variety of workplace fundraising Workplace Has a Heart event when she contacted PHA and requested a free donation to PHA. Jane learned about the blue jeans to wear blue jeans to work in return for a $5 or more for PH research?” way to help than to raise money for awareness and hurt, but this time I can’t,” she says. “So what better “As a Mom, you always try to take away the pain or the immediately knew she wanted to get involved with PHA. with pulmonary hypertension in March 2009, and Jane of help!” she said, “This is my first fundraiser ever, so I need lots When Jane first contacted PHA about hosting the events, Jane Corsnitz had never done anything like this before. th th monthly donor joining! Sustainers Circle PHA is pleased to welcome Jean Sheridan as our Sustainers Circle reached a new milestone in April 2010 with the ’s monthly giving club, the in the Lower Dauphin School District in Pennsylvania, coordinate five efore she worked with family and friends to After the success of the blue jeans events, one of After receiving approval from the district’s Jane and her family decided to hold Jane’s daughter, Ursula Hummel, was diagnosed fundraising events, which encourage employees Sustainers Circle Sustainers donors recognize the benefit of donor. Jean’s generous monthly Blue Jeans for PH toolkit, which details the steps Blue Jeans for PH Sustainers Circle events at schools Reaches then Exceeds 100 Donors! 100 Exceeds then Reaches Blue Jeans events , Our www.PHAssociation.org/Donate/MonthlyGiving 3004 x756 or visit please call Jennifer at 301-565- learn more about monthly giving, continues to grow. If you’d like to credit card or checking account. automated donations through their They also enjoy the convenience of 2010 SUMMER PATHLIGHT Jennifer at 301-565-3004 x756. www.PHAssociation.org/Fundraise/AtWork fundraise for PH at work, please visit our website at Workplace Has a Heart she says. “Fundraising is really fun!” to my heart, and I’m glad I can help in my small way,” a bowling fundraiser for late summer. “PHA is very close she and her husband are now in the process of planning event helped raise an additional $2,360 for PHA. rewarded with a pizza party. This fun, student-centered and the classroom that collected the most pennies was week, students throughout the school brought in pennies recipient of its annual Penny War. Over the course of one PHA Development Associate Development PHA Kaminski Jennifer By PHA’s Teachers at the Lower Dauphin Middle School participate in a in participate School Middle Dauphin Lower the at Teachers To learn more about And Jane isn’t resting on her fundraising success: Sustainers Circle Blue Jeans for PH day organized by Jane Corsnitz Jane by organized day PH for Jeans Blue , and other ways you can Blue Jeans for PH w
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Elzarie Devenish, from Bloemfontein, South South Bloemfontein, from Devenish, Elzarie a PH Retreat host and organize will who Africa, patients together to bring Africa, in South of a weekend for specialists PH-treating and for pad as a launch to serve and education patients; for group a support establishing whose Calif., Clayton, from Groebner, Dee Kathy to teach designed are Packs” Back with “Bears is like life what others by bringing a pump with bears stuffed adorable to packs wearing providing and events, colorful with children for backpacks fun and pumps. their » » ke We are delighted to congratulate each of these of these each to congratulate delighted We are » » our legacy gift can be established in a number of in a number be established can gift legacy our gacy A legacy gift to the Pulmonary Hypertension Hypertension Pulmonary to the gift A legacy Y ways the about out us to find Contact www.PHAssociation.org/Give Ma e For those who have it, PH is not a rare disease. disease. a PH is not rare it, have who those For winners and to thank Gilead Sciences for its support support its for Sciences Gilead to thank and winners of these on each news more for Look program. of this of issues in future programs wonderful award! a for 2011 to apply opportunity the for
not enough people know about the devastation this this devastation the about know people enough not reason more the All day. every to families brings disease PH personally. to take affected those for this to defeat fight our expand only not will Association to of support expression ongoing be your it will condition, struggle in their together bonded families and people the disease. this against and financial various to maximize designed — each ways needs. to individual according benefits, tax your with be involved should consultant financial decision. estate estate in your be included can PHA that or x767 us at 301-565-3004 Call plans. Visit at [email protected]. email at information more for website our l SUMMER 2010 PATHLIGHT Tom Lantos Lantos Tom awards reveals reveals awards
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24 ADVANCING THE CAUSE
» » International Updates: What’s Happening Globally? Happening What’s Updates: International in May, and PHers here in the U.S. got the ball rolling at PHA’s 9 lips can you collect by then? campaign runs through Awareness Month this November. How many PHAssociation.org to get the kissing booth at the event, and contact Christine at International@ Check out www.PuckerUp4PH.com galvanized thousands of PH supporters all over the world last year (visit attention to cyanosis, or blue lips — a common symptom of PH, and International PH Conference! The energizing awareness campaign calls I er Up 4 PH Aareness s e n e r Awa H P 4 p U r ke c u P » » www.PHA ssociation.org launched the second iteration of the popular PuckerUp4PH campaign raise awareness of PH and break the Guinness World Record! PHA-UK t’s time to break out the blue lipstick one more time in an effort to Patient’s Survival Guide Reaches Iran Big Steps for Swiss Group F See who was there and what they shared. Visit Visit shared. they what and there was who See more information. Christine at [email protected] for be available for purchase in August. Contact now, Farsi! The Iranian version of the guide will Spanish, Chinese, Japanese, Korean and, Survival Guide PHA’s (SPHV). Switzerland, a country less than twice in Switzerland, the Schweizer PH-Association has grown into the first official PH association excited to share that this year the support group Swiss PH Support Group 10 years ago. We’re certainly is for Bruno Bosshard, who began the small packages and to those who wait. It It must be true that good things come in both irst the size of New Jersey, boasts four official languages, making patient organizing and www.PHAssociation.org/Conference education a unique challenge. They have
I Pulmonary Hypertension: A Patient’s nternational been actively hosting meetings and raising awareness of PH, working www.lungenhochdruck.ch closely with PHA Europe. Learn more at has been fully translated into to view the photo gallery and learn more). Y OUR PuckerUp on! The PuckerUp4PH w
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pleased to play a part in such crucial education. professionals who need it most, and we are received to get the journal out to those medical opportunity PHA has program. This is the second international distribution Lilly, Inc. to support PHA’s and sponsorship from partnership of 20 PH groups the U.S., thanks to the treating physicians outside delivered this year to PH- Hypertension of Well over 1,000 copies www.phassociation.uk.com the radio show for PHers, tune in online! Visit if you haven’t listened to “EmPHAsis On Air,” contact [email protected] — and two impressive guides. For more information, intimacy or clinical trials? PHA-UK has released Looking for more information about issues of www Advances in Pulmonary .PH th were hand- International PH Conference! Conference! PH International A ssociation
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PATHLIGHT SUMMER 2010 2010 SUMMER
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ADVANCING THE CAUSE 25
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After becoming becoming After 1230. 1230. PH Helpline: 1-800-748-7274 Y www.BachtoHealth.org of passersby who threw threw who of passersby open an into donations case. instrument Roter Dr. a physician, help could he realized by people more far unique his combining and in medicine talents He recreated music. street-playing his by merging experiences recorded recently his Bach’s J.S. of videos w www.PHAssociation.org/Awareness/
Learn more about raising PH awareness through through awareness PH raising about more Learn service announcement about the Arizona Spur A Cure Cure A Spur Arizona the about announcement service KO Channel Clear to fundraiser the media, visit visit media, the ThroughTheMedia Pat Harrington (second from right) with the Spur A Cure planning committee By Adrienne Dern PHA Senior Vice President masterpiece “Cello Suites” with his own videos of videos own his with Suites” “Cello masterpiece 5 No. in C minor: Suite he selected PHA, For Manhattan. of this rendition Roter’s Dr. To enjoy Sarabande. The go to of music, piece beautiful SUMMER 2010 PATHLIGHT . Harrington Pat McCallum Brenda C, Dr. Roter Roter C, Dr. Y and and www.puckerup4ph.com http://wtvi.org/healthwisepd.cfm http://wtvi.org/healthwisepd.cfm Linda Miles Linda received newspaper and television television and newspaper received initiative to initiative While Dr. Roter Roter Dr. While in N student a music While
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occasionally performed as a “street musician.” He says He says musician.” as a “street performed occasionally thousands of the generosity the forgot he never that trained cellist has combined combined has cellist trained — medicine passions two his the — to create music and Health to Bach a personal have doesn’t in his represented 36 diseases of the to all connection who mother-in-law, his to PH: one have he does project, pulmonary developed ago, years several away passed scleroderma. with in association hypertension help support “outstanding “outstanding support help and charities health-care including organizations,” Hypertension Pulmonary the Association. Y PHers Raise Awareness Through a Variety of Media Outlets E ER Doc Has Special Talent and Big Heart for PH Patients PH fundraiser, build support for PH research or help help or research PH for support build fundraiser, PH story your need, they care the find patients undiagnosed way the of examples few a just are Here newsworthy. is coverage. news utilizing been have PHers PuckerUp4PH 2010 the introduced she when coverage Amber daughter, her of memory in U.S. the in Campaign a is PuckerUp4PH January. in away passed who Newby, the for Record World Guinness a set to attempt global originated PuckerUp4PH prints. lip blue of number largest The PHA-UK. by coordinated is and Kingdom United the in about more learn To May. in launched officially campaign visit PuckerUp4PH, appeared on HealthWise, a program of WTVI. To watch watch To WTVI. of program a HealthWise, on appeared visit segment, the pulmonary on episode 7 March the to down scroll and hypertension. outlets, media area to out reaching public a submit to invited was right) above, (pictured
26 ADVANCING THE CAUSE
Dr. Ron Oudiz www.PHA ssociation.org F PHA Advocates toMakeSocialSecurityDisabilityMore Accessible to Those Who Qualify Changing Policy OneMeetingataTime produced a training video, available at Leadership (lead author, Adaani Frost, MD), the SSA then denials. Based on a script created by PHA’s Scientific regarding PH were leading to unnecessary application Marsha — shared with PHA that outdated listings employee and caregiver to his wife and PH patient, with the SSA shortly after Alan Harder — former SSA the Social Security Administration. In 2008, PHA met our patients.” help the SSA better determine the need for disability in unique to PH patients will be formally recognized and will the SSA disability guidelines are updated, limitations which seemed to hit home. We believe that by the time described the issues specific to disability in PH patients, were very appreciative of this educational effort. Next, we the nuances of disability in PH patients. The attendees meeting along with Drs. Robyn Barst and Harrison Cardiovascular List of Impairments. determine how PH should be properly integrated into the experts in the PH field — to present at a meeting to Council (SLC) — PHA’s committee of leading medical the beginning. revising language about PH has been on its radar from both their cardiovascular and pulmonary listings, and hypertension. However, change is on the horizon. List of Impairments doesn’t properly include pulmonary language in the Social Security Administration’s (SSA) PH patients may be at a disadvantage because the disability applicants get approved in their initial filing, (SSD) can be challenging. While 30 percent of or PH patients, applying for Social Security Disability This isn’t the first time PHA has worked with Dr. Ron Oudiz, who presented at the April 7 Recently, the SSA invited the Scientific Leadership The SSA is currently in the process of updating is and why it is important to understand “We first gave an overview of what PH receptive to our input,” says Dr. Oudiz. recommendations to SSA) were extremely are the ones making the disability of the Institute of Medicine (who the SSA members and the members extremely important issue. opportunity to provide input on this he heard that PHA had been given an Farber, says that he was delighted when “During the actual meeting, both 2010 SUMMER PATHLIGHT JenniferJaff. CarolVreim aswell asAlan Harder, Gavin Lindberg and McLaughlin,RonOudiz, Erika Berman Rosenzweig and AdaaniFrost, Nicholas Hill, Michael McGoon, Vallerie RobynBarst, Charles Burger, Greg Elliott, Harrison Farber, A Manager Program Insurance PHA Beardsworth Margaret By assistance less of a hurdle for PH patients. the updated listings should make receiving disability continued involvement of the SLC and the PH community, periods and even more revisions. However, with the through a multi-step process involving public comment listings, as any changes to federal regulations have to go the revisions in their cardiovascular and pulmonary adjudicators about PH-related listings. www.PHAssociation.org/SSAVideo timeandexpertise onthis initiative, including Drs. specialthank youtoall who have volunteered their The SSA is still only in the early process of making decide if you are disabled: The SSA uses a five-step process to 5. 4. 3. 2. 1. Can you do any other type of work? Can you do the work you did before? of Impairments? Is your medical condition on the List Is your medical condition “severe”? Are you working? goes on to the next step. disabled. If it does not, the SSA a listed impairment, you qualify as condition meets or equals that of mean you are disabled. so severe that they automatically medical conditions considered of Impairments that describes determined. The SSA uses its List disability can potentially be
If the severity of your medical This is the first step where
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ADVANCING THE CAUSE 27
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PH Helpline: 1-800-748-7274 www.PHAssociation.org/Patients/Insurance
Visit our Online Insurance Guide. view to The legislation will require guaranteed issue issue guaranteed require will legislation The toward shift to begin efforts reform As the view to or involved get can you how out find To Eliminate pre-existing coverage exclusions for for exclusions coverage pre-existing Eliminate adults; to families income low for subsidies Establish exchanges; the through coverage purchase and caps; benefit annual Prohibit for days 90 than greater of periods waiting Prohibit begin. to coverage • • • • By Margaret Beardsworth PHA Insurance Program Manager 2014... Starting variation rating allow and coverage of renewability and and composition family area, rating age, on only based to required be will individuals most Since use. tobacco be also will states coverage, insurance health obtain or — exchanges insurance health establish to required offer can companies insurance where — marketplaces addition, In businesses. small and individuals for plans will: law the policy for advocate to continue will PHA implementation, Principles of Statement our mirror that regulations and healthcare to access increase and reform Healthcare on patients. PH for visit reform, healthcare on statement entire www.PHAssociation.org/Advocacy/Alerts SUMMER 2010 PATHLIGHT Understanding & Understanding Financial Financial section. sections. Look for Look sections. Medicare and
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Because of the complexity of some of the the of some of complexity the of Because PPACA requires the establishment of high-risk high-risk of establishment the requires PPACA According to the Congressional Budget Office, the the Office, Budget Congressional the to According
Require insurers to allow young adults to stay on on stay to adults young allow to insurers Require 26; age until policy parents’ their doughnut D Part Medicare the out phase to Begin 2020); by out phased completely be (to hole caps benefit lifetime imposing from insurers Prohibit efforts; advocacy PHA’s in cornerstone another — children to coverage denying from insurers Prohibit condition. pre-existing a have who 19) age to (up [email protected] or 301-565-3004 x773 for x773 or 301-565-3004 [email protected] about or comments suggestions or to offer information more guide. the
information on Patient Assistance Programs and general general and Programs Assistance on Patient information section. Assistance Financial the under programs support you to help diagrams and charts resources, helpful Or find in the coverage Medicare your understand Medicare Insurance: Your Choosing PHA he Patient Protection and Affordable Care Act Act Care Affordable and Protection Patient he 2010, 23, March on law into signed was (PPACA) of brink the on is States United the in healthcare and
• • • • undertakings required to implement these changes, changes, these implement to required undertakings 2014. until effect take not will requirements the of many pools for people with pre-existing conditions who have have who conditions pre-existing with people for pools prohibits and months six least at for uninsured been beneficiary a once policies rescinding from insurers will: it Additionally, sick. becomes Only months after enactment... after months Only legislation will provide coverage to 32 million currently currently million 32 to coverage provide will legislation that vision the toward leap a — Americans uninsured universal, is that healthcare have will patient PH every and sustainable affordable, (portable), continuous accessible. change. Although the bill does not fully address all the the all address fully not does bill the Although change. provisions the of many community, PH the of concerns to initiatives advocacy long-standing own, our with align patients. PH for care of quality the improve T Healthcare Highlights: A Brief Look at the New Law
a d v o c a c y i n a c t i o n
By Katie Kroner PHA Director of Advocacy and Awareness
Patient Outreach Leads to 2 nd Senate Co-Sponsor for PH Bill Your Help Needed to Keep the Momentum
“The key thing for anyone whose [Member of Congress] doesn’t agree to co-sponsor during the first meeting is to follow up. You plant the seed and when you follow up, you’re watering it. Hopefully, it will grow into co- sponsorship.” ADVANCING THE CAUSE hose words of wisdom are from PH patient and 435 Campaign member Diane Ramirez whose senator, Kay THagan (D-NC), became the second Senate co-sponsor of the Tom Lantos PH Research and Education Act of 2009. With the help and support of PH patients Cindy Pickles and Janet Cecil, Diane began reaching out to L to R: Diane Ramirez, Cindy Pickles, Senator Hagan and Janet Cecil Hagan shortly after she was elected in November 2008. She spent almost a year corresponding with staff in n August, Members of Congress leave Washington, Hagan’s district office, but they had trouble fitting her in D.C., and work from offices in their home states. to the Senator’s busy schedule. I Chances are, your senators and representative have Finally, Janet, Cindy and Diane decided that if an office near you. Hagan wouldn’t come to them, they would go to her. In Join the District Visit Campaign and schedule October 2009, they drove to Washington D.C., and met a visit with your senator or a staff member in his or face-to-face with Hagan during her weekly constituent her local office. coffee. Get started today by contacting Elisabeth at Over the next few months, Diane followed up [email protected] or 301-565-3004 x753 with the Senator’s office through phone and email. In or by using the resources on PHA’s website: February, Hagan became the second Senate co-sponsor www.PHAssociation.org/Advocacy/ConnectLocally of the Tom Lantos PH Research and Education Act of 2009. w
Welcome, Elisabeth Williams, Grassroots Campaigns Associate! As Grassroots Campaigns Associate, Elisabeth works to build the 435 and PHAware Campaigns and support current Campaign members. The 435 Campaign, PHA’s grassroots legislative network, is comprised of volunteers who communicate with their Members of Congress and engage them in critical pulmonary hypertension legislative issues. The volunteers who make up the PHAware Campaign work with local media to share the stories of how pulmonary hypertension has affected their lives. Elisabeth is available to provide resources, advice, and support to anyone interested in PH advocacy or media awareness. She graduated with a B.A. in Political Science from the University of Nevada, Reno, and just received a Masters in Education Policy from the University of Maryland, College Park. Elisabeth can be reached at [email protected] or 301-565-3004 x753.
28 www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 ADVANCING THE CAUSE 29
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by s ’ Aware Campaigns Aware and PH and PH Helpline: 1-800-748-7274 435 avigator N
In the subject category in which PHA is rated — is rated PHA in which category subject In the www.PHAssociation.org/CharityNavigatorRating outperforms most other charities in America. He goes He goes in America. charities other most outperforms … designation ‘exceptional’ “This that on to say Association Hypertension Pulmonary the differentiates it is public to the demonstrates and peers its from trust.” of their worthy than — fewer Disciplines Disorders, Diseases, Health: harity n t e r n s ! ouTube channel. “Working at PHA provided excellent excellent provided at PHA “Working channel. ouTube w 25 percent of charities in this category currently have a have currently category in this of charities 25 percent profile, PHA’s read to and information more For rating. 4-star go to
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writing action alerts, communicating with special events coordinators about their advocacy efforts, efforts, advocacy their about coordinators events special with communicating alerts, action writing tracking video PHA’s to improve He worked contacts. as legislative as well hits news tracking and of PHA’s use and system editing and firsthand experience. I was able to learn and develop skills that will allow me to be more effective effective me to be more allow will that skills develop and to learn I able was experience. firsthand Work in Social a Masters with 2010 in May graduated Warren he says. career,” work in my social Forces. Armed U.S. of the veterans for as an advocate a career to pursue plans and Nick Petropoulos, Volunteer Services Department Services Volunteer Petropoulos, Nick of America. University Catholic The from 2010 May in degree of Arts Bachelor his received Nick able was and groups support 215 than more PHA’s with he worked at PHA, internship his During groups of support number current the to boost leaders interested and new with to collaborate life daily the to my eyes opened has leaders and PH community to the out “Reaching to 225. says. Nick program,” group support of the out get they joy the and of PH patients struggles and as the staff PHA’s joined Nick internship, of his end At the program!” is an excellent really “It in to school he returns until role in this remain he will and Associate, Program Services Volunteer at [email protected] by email be reached can Nick welcome! and Nick, you, Thank fall. the x758. at 301-565-3004 or by phone Department Services International Chaudhry, Sona as the spring us this joined of Maryland, University of the graduate a recent Chaudhry, Sona coordinated listing, Therapies Worldwide the to update worked Sona Intern. Services International membership international to increase initiative on an work began and program, Translations our as her as well interests, pre-med and background science Her Researchers. and in PH Clinicians department. to the asset a her valuable made experiences, healthcare and travel international be attending will and summer this in Ethiopia mission a medical on to complete went Sona fall. in the school medical Department Awareness and Advocacy Bell, Warren to explore to PHA came of America, University Catholic The from student a graduate Bell, Warren of the is a and veteran University State Bowie from a has B.S.W. Warren in advocacy. interest his the supported Warren PHA, at As an intern Navy. States United it
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F PHA 4-
30 ADVANCING THE CAUSE
S www.PHA ssociation.org T Meetings View of Group Point Support Patient’s a Attending From of Cons and Pros The L 4 time, was not overwhelming. Being able to meet others organized; it had a little of everything and, at the same attendee. “This was my first meeting and it was very well speakers and approaching them,” explains a second speakers, expanding their membership and much more. caregiver leaders discussed ideas for meeting topics, PHA Board Meeting in Garden Grove, Calif. Patient and helpful.” they hold the groups together and raise funds was very networking with other group leaders. Hearing about how Regional Training. As one leader explains, “I enjoyed PHA’s fourth annual Support Group Leadership Institute groups came together in Garden Grove, Calif., for regional trainings. series of monthly phone trainings and annual in-person need through our Support Group Leadership Institute, a We at PHA help our busy leaders develop the skills they challenges of life managing pulmonary hypertension. leaders are busy people with families, jobs and the another. most of us have had these reservations at one time or from attending a meeting. are the cons, or the reasons that may prevent you are afraid to get involved with “sick” people. These the meeting may require some travel. Or maybe you deteriorating state of disease? Perhaps the site of message is as true today as it was 17 years ago. written by Pat Paton, one of PHA’s founders, and its pubished in the 1993 spring edition of Southern California Support Group Leaders Join GroupLeaders Southern CaliforniaSupport Together inCollaboration u th P P development of a good leader. PHA Support Group and error, training and mentoring are key tools in the eaders are not born — they are made. Practice, trial treasures from our past. The following is an article the moving and cleaning process, we rediscovered his past spring PHA moved into a new office, and in Annual Support GroupLeaderTraining: AnnualSupport “As a new leader, my biggest problem is finding This training occurred in conjunction with our In March, 12 leaders who manage nine support Are you fearful of finding other patients in a t r o G u o r p s Y ou are not alone. Pathlight Y ou see, . It was Group and Piedmonth, North Carolina, Support Group. Carolina, Support Group andPiedmonth,North Group ofSouthOrangeCounty,Support Greater Atlanta Support Beach,Los AngelesPediatricGroup, SanDiego,Wojo Newport Groups Group, represented Support atthetraining:InlandSupport 2010 SUMMER PATHLIGHT that you are not alone. through some difficult times. Most of all, you will with the satisfaction of knowing that you can help others must do. Once you attend a meeting, you will come away may learn ways to ease the day to day tasks that you doing. encouragement in seeing firsthand how well others are meet each other and share their concerns. letters and phone calls between meeting dates. establish friendships that can be continued through information and ideas with each other. and feelings that you have. to meet other patients with the same fears, experiences Services Volunteer of Director PHA Castro Debbie By United Therapeutics. Institute are made possible by an endowment from the trainings provided by the Support Group Leadership who are working toward the same goal was inspiring!” Meetings offer opportunities for family members to Now consider the pros. The Southern California regional training and all of Y ou may learn more about your disorder, or you w w
Y ou have a chance to share Y ou have the opportunity
Y ou will probably Y
ou will find know
PATHLIGHT SUMMER 2010 2010 SUMMER
elpline: 1-800-748-7274 Helpline: PH
ADVANCING THE CAUSE 31 s p w o r t g r o u pp u PH Helpline: 1-800-748-7274 S ear awards so far and hopes to find find to hopes and far so awards ear Y any patients find real meaning meaning real find patients any life. of part integral an being in family) is central to our identity identity our to central is family) We meaning. lives our gives and with continue to able be to want work of keeping a home and and home a keeping of work work outside the home or the the or home the outside work being defined by their disease. disease. their by defined being professional is it (whether Work continuing with their lives and not not and lives their with continuing want to be part of their world, world, their of part be to want ideas, our plans, our strategies strategies our plans, our ideas, PH with People schemes. and want people to pay attention to our our to attention pay to people want We want to be in the thick of it. We We it. of thick the in be to want We M
Linda encourages all support groups to consider consider to groups support all encourages Linda bestowed has Group Support PAH NW Inland The the important activities that framed our lives lives our framed that activities important the words, dreadful those heard we before day the hypertension.” pulmonary have you Pall, “Dr. Linda Pall shares her ideas about what what about ideas her shares Pall Linda patient: PH a to mean can work By Megan Mallory PHA Publications Manager of his professors had a terminal disease was really really was disease terminal a had professors his of immediately was “He remembers. Linda phenomenal,” conditions other rooms, schedules, rearrange to anxious that me assured He get. would I needed, I whatever — teaching my of security the about worry not should I position.” hugely is it think “I way. this in employers recognizing work, their with continue who patients, PH for important be and recognized employers cooperative their have to group support the to persons or person that bring to able every that think also “I says. Linda off!’” them ‘show to of rest the give we employers, deserving award we time a is PH emulate. to examples good world business the have not does that challenge a is it but disease, terrible Continuing confirmed. is diagnosis the when life end to meaningful.” life one’s keep helps work productive the of Employer two November. this candidate deserving third a SUMMER 2010 PATHLIGHT ear and — and ear Y ear award went to to went award ear ear, Caregiver of the the of Caregiver ear, Y Y ear award based on the employer’s ability to to ability employer’s the on based award ear Y Each year during PH Awareness Month in in Month Awareness PH during year Each “Just doing the minimum does not not does minimum the doing “Just award employer deserving find To the of Employer first The “I love recognizing people publicly for their good good their for publicly people recognizing love “I Employer the for recipients chooses group The
hile a pulmonary hypertension diagnosis often often diagnosis hypertension pulmonary a hile patients some job, a holding from patients prevents both of challenges the balancing work, to continue
ear, Physician/Medical Professional of the the of Professional Physician/Medical ear, ear. W can employer understanding An life. work their and PH PAH NW Inland the and easier, much balance this make employer this recognize to decided has Group Support commitment. fundraising a holds group support this November, the in awareness raise and support garner to luncheon to element fresh a add to 2005, In PH. against fight with individuals recognizing began group the event, the the of Patient as such awards Inland NW Support Group Honors Supportive Employers Y Washington at Greenburg Robert Dr. employer Linda’s one that hearing to response “His University. State qualify,” Linda says. “A very important important very “A says. Linda qualify,” and having is puzzle the of piece the individual, the for respect showing the and themselves of have they image their for have they dreams and hopes disease.” the despite work, and career requesting begins Linda candidates, meetings group support at nominations She fall. early and summer the during general for release press a creates also nominees have not do we “If distribution. present don’t we worthy, really are who to wanted have “I says. Linda award,” the of people for honor genuine a as this keep contribution.” significant and distinction real recognize the impact PH has on an employee’s life and and life employee’s an on has PH impact the recognize of needs the to creatively and sympathetically respond to employee. the when they find a deserving candidate — Employer of the the of Employer — candidate deserving a find they when Y awards the of coordinator Pall, Linda says works,” the honors “It leaders. group support the of one and selfish the (here’s and contributed, has who individual the made have who those on glory reflected casts it part) award.” the of
32 ADVANCING THE CAUSE
T previous years’? How was this year’s Crawfish Festival different from of pulmonary hypertension. events with lots of opportunity for awareness and education We’d describe them as simple and relatively low-cost family Can you describe the concept behind your bug boils? had to say: evolution of their fundraising efforts, and here’s what they pieces of chicken.” pounds of crawfish, 160 pounds of alligator and 2,000 … We had approximately 2,000 in attendance, ate 6,000 “It was a great success, gorgeous day and fun had by all. Commerce and re-named The Woodlands Crawfish Festival: a partnership with The Woodlands, Texas, Chamber of sums up this year’s bug boil, which was the result of great cause. Texans party New Orleans style each spring to benefit a “bugs”) and plenty of activities for the kids helped these born. Lively zydeco music, steaming plates of crawfish (or cure — and the annual CurePH Crawfish (“Bug”) Boil was the switch from swinging golf clubs to eating “bugs” for a golfers, establishing itself as a go-to community event. in 1999. Stibbs’ first event for PH research was a golf tournament popular that it sold out! committee, this exciting New Orleans-themed event was so Jack Stibbs, his wife Marcia and their CurePH fundraising Board of Trustees member history. Hosted by PHA the largest in its three-year this year’s “bug boil” was and general communities, in attendance from the PH level. With 2,000+ people research to a whole new awareness and funds for Texas, brought raising PH Crawfish, Zydeco and Alligator? Oh My! Oh The Woodlands Crawfish Festival Continues aLongLegacy ofImpacting PHResearch Alligator? and Zydeco Crawfish, P s www.PHA ssociation.org 27 in The Woodlands, Festival, held on March he Woodlands Crawfish We asked both Jack and Matacha to talk about the CurePH event committee member Matacha Saul Then in 2008, the Stibbs family decided to make The CurePH legacy has quite the backstory: the s t n e v e l a i c e Y ear after year it drew larger and larger crowds of This year was really different only in scale $30,000 to support PHA’s Research Program. Research PHA’s support to $30,000 than more gross to able was Festival Crawfish Woodlands 2010 The crawfish. eat to tables of dozens across spread Picnickers time! Chow 2010 SUMMER PATHLIGHT who will help you plan — and keep it simple! PHA fundraiser? Any advice for someone who is thinking about planning a designing a new event logo emphasizing PH. make the event even bigger and better, and we will be Woodlands Crawfish Festival? Is there anything new in the works for the 2011 flourish for many years to come. believe we have started something that will grow and as a result of The Woodlands Crawfish Festival? Have you seen any long-lasting impact on the community local vendor of our event is a PH patient. from out of state, such as Colorado. We also learned that a awareness-raising? What sort of impact do you think this had on local PH You had more than 2,000 attendees at the festival. Commerce to promote The Woodlands Crawfish Festival.] Y outlets. [The CurePH Committee partnered with the through the local Chamber of Commerce and media How did you conduct outreach for your event? hypertension. the opportunity for increased awareness of pulmonary rewarding aspect of expanding the event this year was aspect of expanding the CurePH bug boils? PHA Special Events Manager Events Special PHA McKearin Jessica by conducted Interview oung Professional’s Network from their local Chamber of Start with a small committee of volunteers High! We had a few PH patients come What was the most rewarding fast. so as not to get too big too sure we controlled attendance boils? expanding the CurePH bug challenging aspect of What was the most more logistical planning. 2,000 plus people required — feeding and entertaining In 2011, we are going to Believe it or not, making
The most w Advertising We
PATHLIGHT SUMMER 2010 2010 SUMMER
elpline: 1-800-748-7274 Helpline: PH
ADVANCING THE CAUSE 33
our our Y ecial events s P PH Helpline: 1-800-748-7274 Annual Scramble for a Cure golf golf Cure a for Scramble Annual nd
ore than 150 people from all walks of of walks all from people 150 than ore “Rock at cure a for out rocked life t’s raining … golf balls? With an assist from a from assist an With balls? golf … raining t’s 2 the helicopter, Heart Out for Pulmonary Hypertension,” Hypertension,” Pulmonary for Out Heart by hosted Atlanta in concert benefit a Hope Generation PHA and patient PH right). (pictured Riggins Brittany member and bands three from Performances more generated opportunities raffle exciting PHA. for $4,000 than M I tournament in Las Vegas, Nev., completes the “ball “ball the completes Nev., Vegas, Las in tournament of owner the which in concept raffle 50/50 fun a drop,” wins. hole the to closest landing ball the SUMMER 2010 PATHLIGHT Check out these spring special events! Annual Spur A Cure for PH. This This PH. for Cure A Spur Annual th Event planners get creative across the country.
he Southwest Virginia PH Support Group, family family Group, Support PH Virginia Southwest he Inaugural their at pose to out time take friends and
ancers don their best cowboy boots as they “pony up” up” “pony they as boots cowboy best their don ancers 4 the at cure a for T Radford Fun Walk for a Cure. The rain couldn’t couldn’t rain The Cure. a for Walk Fun Radford and fun the from away group dedicated this keep and raffle luncheon, a included which fellowship, and research towards raised was $2,500 Over DJ! services. patient/family
D more than $20,000 for PH research and services. and research PH for $20,000 than more Phoenix-based western-themed dinner and auction raised raised auction and dinner western-themed Phoenix-based
34 ADVANCING THE CAUSE
One EventClosertoaCure. I Event? Special a Plan series. to four-part a in Take first The It Does What support group for help, enlist family and friends, invite that all responsibilities are covered. Contact your local sure to recruit volunteers early and assign tasks so help to you, both before and during your event. Make More to come on this topic as our article series continues! participants can get involved to provide financial support. an event can raise funds. Both sponsors and event your special event, remember there are various ways PlanningTimeline day. Visit what you need to do each month leading up to the big Once you choose your event, work backwards to determine events need a certain amount of planning beforehand. same park might be a little chilly in December. a perfect place for a summer fun walk in Maine, but that location that fits the event. For instance, a park would be anniversary or other special day in your life. Choose a with PH Awareness Month in November or a birthday, but you might also want to consider connecting your event event. Weekend events tend to get the best attendance, choose will impact the turnout and overall success of your SpecialEvents/Guidebook a successful event and visit services and medical education. chance to directly impact PH research, essential patient a special event, you, your friends and family have the P s 101 refresher course — PHA is here to help! By hosting your neighborhood — or if you just need a Fundraising f you’ve ever considered planning a PHA special event in www.PHA ssociation.org Gala Concert Dinner Swing Climb Run Walk s t n e v e l a i c e Recruit Volunteers: Remember fundraising: Make a timeline: Choose a date, time and location: Read on to learn the five key ingredients for planning www.PHAssociation.org/SpecialEvents/ to view a sample planning timeline. Each event is different, but all Volunteers will be a HUGE for even more nitty-gritty details. www.PHAssociation.org/ Before you begin to organize ” l u f - t n e v E “ r e b m e v o N e k a M W Manager,[email protected] or301-565-3004 x765. www.PHAssociation.org/SpecialEvents/Guidebook eventplanners, making your November “event-ful” hasnever been easier! SpecialEvent fundraiser. With PHA’s resources designed especially forvolunteer The date you grabyour family andfriends andbegin planning your PHAwareness Month hetheryouchoose towalk, sing ordine forcure,a now’s theperfect time to Kickoffyour planning process bycontacting Jessica, PHA’s Special Events Formore information, visit PHA’s online Special Event Planning Guidebook at 2010 SUMMER PATHLIGHT in the next issue of or 301-565-3004 x765. Look for more special events tips Special Events Manager, at [email protected] www.PHASpecialEvents.org about planning a special event, visit PHA’s website at throughout the planning process. For more information this topic as our article series continues! — you will raise awareness about PH. More to come on attendees, volunteers and donors and — most importantly event online, offline and through the media. match tasks to volunteer skills. before the event, as well as the day of the event, and a list of all tasks that need to be completed by volunteers have any useful business or community contacts. Create and experiences they can bring to the event and if they individually to find out what their interests are, what skills volunteers online. If you have time, talk to volunteers neighborhood and school groups to get involved or find own? your of event an planning about Thinking www.PHAssociation.org/SpecialEvents/Stories event and others at PH Conference! Check out the story behind her Special Events panelist at PHA’s 2010 International Here’s some inspiration and advice straight from a And remember, PHA is here to support you Publicize your event: community; utilize the amazing support staff at PHA; friends, colleagues and family members from your fundraising effort, you won’t be alone — gather contact other organizers for advice. Have fun!” “‘Just do it.’ Whether it’s a big event or a small Biennial Rochester PHA Gala; Rochester, Minn. Pathlight Spread the word about your . or contact Jessica, PHA’s
~ Bonnie McGoon,
Y ou will attract
PATHLIGHT SUMMER 2010 2010 SUMMER
elpline: 1-800-748-7274 Helpline: PH
PH A u P c o m i n g E v e n t s
Sat., Aug. 21, 2010 Sat., Oct. 2, 2010 Sat., Nov. 6, 2010 E S U A C E H T G N I C N A V D A PHA Cut-a-thon 6th Annual New York Funwalk for PH PHenomenal Hope for a Cure WHERE: Bridgton, Maine WHERE: Long Island, N.Y. WHERE: Omaha, Neb. DETAILS: Mitzi LaBarge at DETAILS: Joanne Schmidt at DETAILS: Cindy Klein at 402-699-0733 [email protected] or 207-647-0921 631-427-4586 or or [email protected] [email protected] August 2010 Sun., Nov. 7, 2010 Pulmonary Pints — Pubcrawl for PH Sat., Oct. 2, 2010 10th Annual Race Against PH WHERE: Baltimore, Md. 7th Annual GA Fun Walk for a Cure WHERE: Stanford University Pac-10 DETAILS: Ashley Boehk at WHERE: Marietta, Ga. Plaza, Stanford, Calif. [email protected] DETAILS: Sally Maddox at DETAILS: www.raceagainstph.org [email protected] or or contact Lori Barth or Victoria Fri. & Sat., Sept. 17-18, 2010 706-331-0938 Rodriges at [email protected] New England “Swinging for a Cure” or 800-640-9255 Golf Tournament and PH Forum Sat., Oct. 23, 2010 WHERE: Scarborough/Portland, Maine 2nd Annual “Through Tears Comes Sat., Nov. 13, 2010 DETAILS: Jeannette Morrill at 207-695- Laughter: An Evening of Comedy and 2nd Annual Arizona Cure PH Casino 3042 or [email protected] Music to benefit PHA” Night WHERE: Charlotte, N.C. WHERE: Phoenix, Ariz. Sun., Sept. 19, 2010 DETAILS: Contact Glenn Johnson at DETAILS: Sharon Venrooy at 602-978- Colorado Pulmonary Hypertension 5K [email protected] 2473 or [email protected]; Run for PHun Joanne DeOliveira at WHERE: The Children’s Hospital, Sat., Oct. 30, 2010 [email protected] Aurora, Colo. Halloween PHestival DETAILS: Deb McCollister at WHERE: Yukon, Okla. Sat., Nov. 13, 2010 [email protected] or DETAILS: Tammie Sharp at 3rd Annual South Florida PH Fun Walk Beth Coleman at 405-265-0230 WHERE: Pompano Beach, Fla. [email protected] DETAILS: Pat Hellyer at 561-628-5597 Sat., Nov. 6, 2010 or [email protected] Mon., Sept. 27, 2010 2nd Annual Baltimore PH Walk for Texas Legacy Charity Golf Tournament Hope WHERE: Trophy Club Country Club, WHERE: Baltimore, Md. Dallas, Texas DETAILS: Janice Frederick at DETAILS: http://tlcgolf.vpweb.com or [email protected] or Fred Allen at [email protected] 410-328-7260 or 817-577-5331
For more special events coverage visit To view a complete, up-to-date listing visit www.PHAssociation.org/SpecialEvents www.PHAssociation.org/Events
Welcome, Jenna Roe, Special Events Program Associate! As PHA’s Special Events Program Associate, Jenna is responsible for working with PHA’s veteran volunteer event planners, providing them with the tools they need to host successful fundraisers for PHA’s research program and patient services. Jenna also works to revitalize and refine the resources PHA’s Special Events program provides to its volunteers, including the launch of “Event-ful Times,” a bi-monthly e-newsletter geared toward planners. Jenna earned her Bachelor’s degree in Public Affairs from Indiana University-Bloomington in 2009 and recently completed a year-long placement with AmeriCorps *VISTA. She can be reached by email at [email protected] or by phone at 301-565-3004 x742. PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 35 community classroom Thank You, Conference Volunteers, Speakers, Attendees and Supporters
n June 25-27, PHA hosted our 9th International PH the Patient/Family Led Sessions and the Support Group Conference and Scientific Sessions in Garden Grove, Sessions. We appreciate how difficult it may be to share the OCalif. Conference was a huge success because of the emotions and stories of life with PH. tireless efforts of our volunteers and the enthusiastic spirit PHA would also like to extend a big “thank you” to of our attendees. Our volunteers and community members, every patient, caregiver, family member, medical professional as well as those who serve each year on our Conference and supporter who attended this year’s Conference. Planning Committee, spent many hours planning each This biennial event would be nothing without the spirit, detail of Conference to make it a special experience for energy and thirst for knowledge you’ve shown. YOU make our patients and family members. We’d especially like to Conference the life-changing experience that it is! w thank those who stepped up to share their experiences in
What’s Next After Conference? Stay Tuned at www.PHAssociation.org/Conference hat’s next? Lots! In the fall issue of Pathlight we will a number of Medically Led and Patient/Family Led breakout Wshare some additional highlights, stories and photos educational sessions. This was to allow us to create an from our International PH Conference. We want to hear from extensive video online library that will be available on PHA’s you! Please submit your Conference stories and feedback to website in the coming months. Select sessions will be [email protected]. Also, we invite you to visit posted online, allowing presenters to share their Conference our website (www.PHAssociation.org/Conference) in the presentations and expert knowledge with the whole PHA coming months to view Conference photos, video footage, community. If you were unable to attend Conference, or just Journeys stories and downloadable PDF documents of unable to attend a particular session, you will be able to session handouts. learn online with PHA! We hope these videotaped sessions But wait, there’s more! If you were in attendance at will bring a small part of the Conference experience to all of Conference, you may have noticed that PHA was recording our PHA members. w
Thank You, Conference Sponsors! PHA thanks our corporate sponsors for helping to make our 9th International PH Conference a huge success. Save the Date!
Diamond Sponsors PHA’s 10th International Actelion Pharmaceuticals US, Inc. • Pfizer, Inc. • Gilead Sciences, Inc. Pulmonary Hypertension Conference Gold Sponsor and Scientific Sessions Bayer HealthCare • GlaxoSmithKline • Novartis Pharmaceuticals • United Therapeutics Corporation June 22 – 24, 2012
Silver Sponsor Renaissance Orlando at SeaWorld® LungRx Orlando, Fla. Bronze Sponsors Lilly USA, LLC • Teva Health Systems • Accredo Health Group, Inc. www.PHAssociation.org/Conference Additional Sponsors CVS Caremark • WWMR, a division of IntrinsiQ • CuraScript
36 www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 communit y classroom 37
ou ou Y PH Helpline: 1-800-748-7274 our State our Y
Get the latest news and alerts at at alerts and news latest the Get www.PHAssociation.org/News : Making Media Outreach Work for for Work Outreach Media : Making SUMMER 2010 . To To . PATHLIGHT Aware Campaign Aware has regular regular has Advocacy Action Action Advocacy our Members of Congress without Leaving Leaving without of Congress Members our , , Y w Pathlight in Special Events: PHA Local Event Planning & Fundraising 101 & Fundraising Planning Event Local PHA Events: in Special Media Action Alerts Action Media and and includes sections such as as such sections includes Special Advances in PH in Advances or any of our other e-newsletters, e-newsletters, other our of any or News Put the the Put Working with PH with Working PH the and Events Special My Loved One Has PH: A Caregiver’s Toolbox A PH: Caregiver’s Has One My Loved Visit Locally! Lobby (sponsored by the Centers for Disease Control and Prevention) and Control Disease for Centers the by (sponsored of PH Medications Effects Side Month PH Awareness During Involved Getting Out! Speak www.PHAssociation.org/Classroom/ News
Monthly e-Learning Events arrives in your Inbox, you will see exciting exciting see will you Inbox, your in arrives
Q&A chats, conference call discussions and webinar presentations webinar and discussions call conference chats, Q&A
PHA’s monthly e-Learning Event series is made possible through an unrestricted educational grant from Pfizer, Inc. Pfizer, from grant educational unrestricted an through possible made is series Event e-Learning monthly PHA’s
News Attend PH educational events from the comfort of your own home or office. home own of your comfort the from events PH educational Attend D.C. Metro Volunteers Metro D.C.
Also be on the lookout for new styles on our other other our on styles new for lookout the on be Also Do you prefer to get your news via RSS (real simple simple (real RSS via news your get to prefer you Do visit feeds, RSS our for up sign To
, , Send feedback or suggestions for topics to PHA’s webmaster Diane at [email protected] or 301-565-3004 x759. 301-565-3004 or [email protected] at Diane webmaster PHA’s to topics for suggestions or feedback Send www.PHAssociation.org/EmailSubscriptions
July August August Upcoming Events Upcoming July July September October October ot only do we have a brand new website design, our our design, website new brand a have we do only ot When too. look new vibrant a have e-newsletters PHA
new colors (pictured right) and each issue will be jam- be will issue each and right) (pictured colors new latest the about features and content new with packed as Just community. PH the in news features like “Ask the PH Specialist” and “Meet the the “Meet and Specialist” PH the “Ask like features PHA new the Doctor,” education, medical on information with Smart” “Get and patients for tips with PH” with Better “Living from updates with Scoop” Community “PH caregivers, special and news group support as such community the more. much and events, including e-newsletters, Alerts syndication) feeds? We have them! RSS feeds come to to come feeds RSS them! have We feeds? syndication) free. and simple is Reader Google the and instantly, you www.PHAssociation.org/RSSFeeds RSS Feeds Make Debut on PHA’s New Site New PHA’s on Debut Make Feeds RSS subscribe to PHA to subscribe visit N PHA’s e-Newsletters Get a Makeover!
38 communit y classroom
upcoming travel and healthy eating — will be included across the board in these events. Some of the favorite topics from last year’s events — exercise, signify the success of our educational effort: our expectations. A couple of representative comments by the attendees Mich., to Providence, R.I. — were held last year and greatly exceeded across the U.S. from Costa Mesa, Calif., to Buena Vista, Fla.; Dearborn, improving overall health and disease management. continued education for our patients and families coping with PH is key to information to patients, their families and caregivers. It is self-evident that broad-based medical education effort by PHA to bring updated clinical Forums, a program of the PHA Medical Education Fund, are part of a Washington, D.C. area on Sept. 25 and Dallas, Texas, on Oct. 2. The Mayo Clinic, Jacksonville, Fla. PHA on the Road: PH Patients and Families Education Forums Committee Chair Charles Burger, MD I look forward to seeing you there! coping and daily living. of these personal experiences provides perspective and helpful hints for others dealing with this disease right in your own backyard. The sharing opportunity to learn more about pulmonary hypertension and to meet PHA on the Road: PH Patients and Families Education Forums Education I Families and Attend to Patients PH Burger Road: the Charles on Dr. PHA from Invitation An www.PHA ssociation.org the Road: PH Patients and Families Education Forums would like to personally invite you to attend one of the upcoming “I appreciated the chance to meet one of the doctors from my area.” “There was hope in the air, and I learned where I can get help.” techniques I learned in my daily life!” “All of the sessions were informative and helpful. … I plan to use the An array of topics will be addressed during these free one-day The inaugural PHA on the Road Forums Learn more at ~ PH Patient, Southern California ~ PH Patient, Central Florida PHA on the Road Forums www.PHAssociation.org/OnTheRoad ~ Dorothy Breisch (Madison, Wis.) . PHA on the Road — four one-day Forums held PHA on the Road PHA on the Road is an outstanding in the Baltimore/ 2010 SUMMER PATHLIGHT PHA on COMMUNIT Y C L A S S R O O M 39
* * * , for details. for Deborah Levine, MD Levine, Deborah Center Science Health UT Texas Houston, MD Torres, Fernando Center Medical Southwestern UT Texas Dallas, FNP-C RN, Kingman, Martha Center Medical Southwestern UT Texas Dallas, Helena Purl, RN, BSN, CCRC BSN, RN, Purl, Helena Medicine of College Baylor Texas Houston, PH Helpline: 1-800-748-7274 Understanding Transplant Options Options Transplant Understanding Speakers include: Speakers * www.PHAssociation.org/OnTheRoad
Dallas, Texas Dallas, 2010 2, October Saturday, Central Park Westin p.m. 4:30 – a.m. 8:30 now includes a Kids’ Room for children and and children for Room Kids’ a includes now Branch www.PHAssociation.org/OnTheRoad
Zeenat Safdar, MD Safdar, Zeenat Medicine of College Baylor Texas Houston, ACNP Harden, Scarlett Center Medical Southwestern UT Texas Dallas, MD Duarte, Alexander Medical Texas of University Texas Galveston, Adaani Frost, MD Frost, Adaani Medicine of College Baylor Texas Houston, SUMMER 2010 visit: What Are the Current Treatments for PAH? PAH? for Treatments Current the Are What * Emergency Situations Situations Emergency * PATHLIGHT PHA on the Road the on PHA Life After Being Diagnosed with PH (For Veteran Patients) Patients) Veteran (For PH with Diagnosed Being After Life
www.PHAssociation.org/OnTheRoad/Families * ! PHA on the Road Road the on PHA amilies What Is on the Horizon for PH? for Horizon the on Is What Traveling with PH PH with Traveling F * * How is PAH Diagnosed? Diagnosed? PAH is How for *
oga oga FAACVPR Y Gerilynn Connors, RRT, BS, BS, RRT, Connors, Gerilynn Hospital Fairfax INOVA Va. Church, Falls Virginia Steen, MD Steen, Virginia University Georgetown D.C. Washington, MD Nathan, Steven Hospital Fairfax INOVA Va. Church, Falls
email [email protected] or call 301-565-3004 x764. 301-565-3004 call or [email protected] email
ROAD ON THE THE ON rogramming Exercise and and Exercise For more information about information more For * Speakers include: Speakers P special programming for parents! Visit Visit parents! for programming special ew This is a FREE patient education event. Space is limited and we encourage early registration to better better to registration early encourage we and limited is Space event. education patient FREE a is This N
Baltimore/Washington, D.C. Area D.C. Baltimore/Washington, 2010 25, September Saturday, Hotel North Baltimore Sheraton Md. Towson, p.m. 4:30 – a.m. 8:30
accommodate all those who wish to attend. Register online now by visiting visiting by now online Register attend. to wish who those all accommodate
PH and Connective Tissue Disease Disease Tissue Connective and PH Eating Better Better Eating Living With PH (For Caregivers) Caregivers) (For PH With Living Overview of PH (For Newly Diagnosed Patients) Patients) Diagnosed Newly (For PH of Overview Topics Include: Topics
Baltimore, Md. Baltimore, Johns Hopkins University Hopkins Johns Traci Housten, RN, MS RN, Housten, Traci College Park, Md. Park, College University of Maryland of University Myung Park, MD Park, Myung Richmond, Va. Richmond, Medical College of Virginia of College Medical Paul Fairman, MD Fairman, Paul Baltimore, Md. Baltimore, Johns Hopkins University Hopkins Johns Stephen Mathai, MD Mathai, Stephen
PATHLIGHT SUMMER 2010 www.PHAssociation.org
m e d i c a l p rofessionals Building Medical Education in PH A Partnership Initiative to Advance Medical Understanding of Pulmonary Hypertension Enhance the impact of your Center’s medical education program. p h e n o m e n a l y o u t h Partner with PHA!
classroom Credibility
y • PHA is an internationally recognized and respected organization within the PH medical community including our distinguished Scientific Leadership Council, PH Clinicians and Researchers and the PH Resource Network. As part of the Building Medical Education in PH program, a PHA promotional package is at your
communit disposal including PHA logo, PHA program language and usage guidelines for inclusion on all promotional materials from signage to registration brochures and online outlets.
Contacts • PHA will supplement your medical center’s marketing with our own targeted lists of medical professionals, offering new opportunities for maximum outreach and success.
Continuing Education • PHA provides the opportunity for post-event discussion, follow- up events and a venue for sharing session content through our primary website and the PHA Online University, www.PHAOnlineUniv.org
To learn more about partnering with PHA through Building Medical Education in PH for your next CME event, please contact Priscilla Davis, Medical Education Program Associate, at 301-565-3004 x776 or [email protected]
Building Medical Education in PH events are designed to foster partnerships between PHA and PH Centers to promote continuing education in the field of pulmonary hypertension through CME educational events. More information on upcoming BME events can be found on the calendar listing at PHA Online University: www.PHAOnlineUniv.org/Calendar
Welcome, April Grimsley, Administrative Assistant!
As PHA’s Administrative Assistant, April is the first point of contact for members of the PH community. In addition to general office administration, April supports both the Finance and Development departments with processing donations and letters of acknowledgement. She also assists staff with various Web and IT projects. Prior to joining PHA’s staff as the Administrative Assistant, April served as the Web Reporter Intern in fall 2009, and she helped with PHA’s website redesign in the position of Web Assistant through winter 2009. April can be reached at [email protected] or 301-565-3004 x746.
40 www.PHAssociation.org PATHLIGHT SUMMER 2010 p h e n o m e n a l y o u t h Camille Frede, Youth Editor [email protected]
Congratulations, Hannah Albert, Winner of the Kids’ Mascot Naming Contest for PHA’s International PH Conference!
Hannah Albert submitted the winning mascot name — Hang Ten Harry — for PHA’s International PH Conference kids’ mascot. Hannah’s mother is a PH patient, and recently, PHA spoke with Hannah about how she chose the mascot’s name and how she helps her mother deal with PH.
Where do you live? I live in Cedar Bluff, Mississippi.
How old are you? I am 11 years old.
How did you come up with the name Hang Ten Harry for the kids’ mascot at Conference? I used to watch a lot of surfing shows when I was little.
Did you attend PHA’s Conference in June? Yes, my whole family went. I had never been to California before.
What were you looking forward to the most about Conference? I was looking forward to going on an airplane ride, going to Disneyland and going on the kids’ field trip.
When was your mom diagnosed with PH? She was diagnosed when I was born.
What are your favorite things to do with your mom? We go on vacations like to SeaWorld®.
What do you like to do to help your mom out with her PH?
y a r r h I like to take naps with her and do chores around the house. e n t g a n h What message do you have for other kids whose parents have PH? Just to help out their parents as much as they can if they see their mom or dad is having any difficulties.
www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 41 42 PHENOMENAL Y OUTH
Eric brothers, interview ? e v i l u o y o d e r e h W ? H P h t i w s d i k r e h t o www.PHA ssociation.org o t n o s s a p o t e k i l u o y d l u o w e g a s s e m t a h W ? H P s a h o s l a o h w r e h t o r b a g n i v a h e k i l t i s i t a h W ? s i s o n g a i d H P r u o y e c n i s d e g n a h c e f i l r u o y s a h w o H ? o d o t e k i l u o y o d s e i t i v i t c a t a h W ? s m o t p m y s r u o y e r e w t a h W H P g n i v a h t r a t s t s ? r s i m f o t u p o m y y s d i d n e h W ? d e s o n g a i d u o y e r e w n e h W ? u o y e r a d l o w o H Eric: reallywant meto. Isaac: likecouldn’tI getenough breath andwouldI getdizzy. almostI passed outtwice. Eric: outmultiple times. Isaac: Eric: medicineyoucan feel better andlive pretty a normal life. Isaac: PHfrom Isaac. Eric: catheterizationtoconfirm. elsetohave tofeel that way. Andnow mysister might also have PH.Wehave towait forthe heart Isaac: feelingwell, mymomwill also give mespecial attention. hate!I alsoI sometimes getspecial treatment from theteachers atmyschool, andwhen I’mnot Eric: questionsabout howI’m feeling. Isaac: Eric: Isaac: Eric: August12,2005. Isaac: Eric: Isaac: EricIsaac:& I loveI toplay video games. Mychest would hurt whenplayed I toohard, anditwould behard tobreathe. Sometimes itfelt It’s okay. Itwasn’t asscary formewhen got Idiagnosed because wealready knewlot aabout haveI togothe doctor’s lotanow, andhaveI toget blood work done every month, which longA time ago, whenwas Iaround years5 old. wasIdiagnosed onJanuary 2,2009. am9,butwillI be10onSeptember 22. Y I likeI playing football, andamhopingI togettoplay next school year, butmymom doesn’t I wouldI gettired easily, andwasIshort ofbreath anddizzy. hadIchest pains, andpassedI There arepeople outthere whoknow howyou feel. Itisnotdeatha sentence, andwith Itcanbekind ofscary because knowI how PHmakes mefeel, anddon’tI want anyone NowamalwaysI atthedoctor’s office forsomething, andmymom isalways asking me Whenwas Iaround years2 old. wasIactually diagnosed onmymom’s birthday, turnedI 14onMay26. ouarenot alone, andyou can still have fun, especially ifyoulike video games. Welive inGeorgia.
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Hutchinson Isaac
patients 2010 SUMMER PATHLIGHT PHA Interviewconducted byMira Kruger Pathlight Volunteer
and
Maryland Camp Puts PH Kids in the Summer Spirit
ragonfly Heart Camp was founded in 2006 to and her team throughout the year. L A N E M O N E H P serve children with complex cardio-pulmonary Dragonfly Heart Camp runs for one week each Dconditions. Specifically, the camp summer at the Echo Hill Outdoor School in reserves about half of its enrollment for Wharton, Maryland. In 2010 the camp expects children with pulmonary hypertension; to host 30 campers, who will enjoy many of the other spots are reserved for children the perks of a classic sleep-away summer who have undergone heart or lung transplant. camp, including a campfire, talent show
The camp’s director, Rhonda Cataldo, and zip line. Under the supervision of the camp’s Y H T U O had the idea for the camp when her daughter medical director, Dr. Brian Hanna, all children,
received a heart transplant on her eighth birthday. including those on intravenous medication, will be given During the seven months Rhonda spent at the Children’s the opportunity to swim, many of them for the first time. Hospital of Philadelphia, she found support in the The camp hosts children ages 8-18 and accepts community of parents she met there. The Dragonfly Heart applications on a first-come, first-serve basis. Visit Camp, a 501(c)(3) nonprofit, grew out of their shared www.dragonflyheartcamp.org to learn more. w interest in giving their children some feeling of normalcy and independence after leaving the hospital. By Emma Bonanomi According to Rhonda, the camp’s strong medical PHA Patient Outreach and Services Manager presence, which also includes an onsite doctor and a team of nurses available 24/7, is part of the camp’s Parents: For more information about camps for children appeal to parents. Another is the price tag: free to with PH, visit www.PHAssociation.org/Parents/Camps qualified children, thanks to the fundraising of Rhonda
New Look for PHA’s Generation Hope Generation Hope, PHA’s virtual support group for young adults with PH, now sports a new logo designed by volunteer Susanne Back of Backview Graphics and Fine Arts. Wear Your Hope on Your Sleeve ‘S Visit http://shops.cafepress.com/GenerationHope1 to check out PHA T-shirts, hoodies, mugs and more — all featuring Generation Hope’s Generation new logo. The Generation Hope Café Press shop will donate 10 Hope percent of each purchase to PHA.
Congratulations, Class of 2010! three cheers for the 2010 graduates! No more pencils, no more books! All that studying has finally paid off and PHA couldn’t be happier for all of the PHers who graduated this year. Let us know what you’re up to next! Happy summer and best of luck as you embark on your next journey!
t a l k b a c k ! This is your space. Send your cartoons, drawings, poems, questions, comments on articles or ideas for future articles to Camille Frede, Pathlight’s Youth Editor, at [email protected]. Or contact Megan at [email protected], 301-565-3004 x754.
www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 43 F a m i l y PH o c u s
Frequently Asked Questions for Parents of Children with PH
1. What causes pulmonary hypertension in children?
The causes of pulmonary hypertension in children are essentially the same as in adults; in some cases it is associated with another medical condition such as congenital heart disease or other lung disease; and in other cases we simply don’t know the cause (idiopathic PH). A small percentage of patients have familial pulmonary arterial hypertension, which is an inherited condition.
2. I’ve read about pulmonary hypertension, but most of what I read is about adults with PH. What are the primary differences between PH in adults and PH in children? very little of in their bodies. These include epoprostenol The primary difference between PH in adults and PH (FlolanTM), which is administered intravenously; treprostinil in children is in the treatment. Until recently, there (RemodulinTM and TyvasoTM), which can be administered have been very few clinical trials that study treatments intravenously, subcutaneously or by inhalation; and specifically for children. Because of this, while the iloprost (VentavisTM), which is an inhalation therapy. medications used for children are the same as adults, It is also possible that your child will be prescribed there aren’t specified pediatric doses, which makes going anticoagulation therapy such as warfarin (CoumadinTM) to a pediatric pulmonary hypertension specialist critical. to help prevent blood clots, diuretics to reduce fluid Weight is a very big consideration in determining an retention, and oxygen. appropriate dose for children as opposed to adults where there is standard dosing. 4. What kinds of side effects will my child experience as a result of PH medications? 3. What kinds of treatment are available for children with PH? The most common side effects for all PH medications include headache, nasal congestion, nausea, hypotension There are many medications that are currently used (low blood pressure), dizziness and flushing (feeling of for the treatment of PH in children. They are given in warmth). different ways: by mouth, by inhalation, by continuous TracleerTM and Letairis® could adversely affect the intravenous infusion (directly into the vein) and continuous liver (although this is rare), so monthly blood tests are subcutaneous infusion (beneath the skin). required to monitor liver function. Medications such as bosentan (TracleerTM) and Inhaled therapies (TyvasoTM and VentavisTM) could ambrisentan (Letairis®) are oral therapies that work on also cause cough and throat irritation. reversing effects of endothelin, a substance that PH Side effects of FlolanTM and RemodulinTM also patients tend to have too much of in their bodies. include diarrhea and jaw pain and infusion site pain Sildenafil (RevatioTM) and tadalafil (AdcircaTM) are oral (subcutaneous administration only). medications that help to produce more of the body’s You should discuss all side effects with your medical natural vasodilators (nitric oxide). team even if they seem unusual or are not listed here. There are several medications that work by
mimicking prostaglandins, which PH patients tend to have story continued on next page
44 www.PHAssociation.org PATHLIGHT SUMMER 2010 FAMIL Y P H O C U S 45
w ou should ask how ask ou should Y PH Helpline: 1-800-748-7274 our medical team will be able to be able will team medical our Y
our child can absolutely play with other children. children. other with play absolutely can child our communicating with your medical team will be will team medical your with communicating for treatment right the in determining important the all conducted is being research New child. your treatment in additional result hopefully will that time options. about What kids? other with play my child Can sports? Y more to rest have may child your that be aware Just the on depending children other than frequently who children with playing avoid should and activity etc. infection, respiratory or upper flu the have might on the depend will play can child your sports What severity the is on and child your of treatment type disease. of their of decisions. kinds in these you assist my I be asking should of questions kinds What team? medical child’s are tests certain why to understand important It’s available are options treatment what done, being symptoms effects, side medication child, your for activities what and doctor, to the a call warrant that do. can’t and can child your at to expect what and them see should you often to how out to find important also It’s visit. each business normal after team medical your reach between questions your of all a list Keep hours. no silly are there that remember and appointments to ask! be afraid so don’t questions, Answers provided by Daniela Brady, RN, Pulmonary Hypertension Center at the Columbia University Medical Center 9. SUMMER 2010 10.
or give us a call. call. a us give or PATHLIGHT to become a member of PHA today! today! PHA of member a become to Not a member? member? a Not Now Only $3 ($5 after October 1) October after ($5 $3 Only Now page www.PHAssociation.org/Store Questions? Call the PHA Office at 301-565-3004. 301-565-3004. at Office PHA the Call Questions? Order now through October 1 at the PHA Online Store, Store, Online PHA the at 1 October through now Order previous www.PHAssociation.org/Join Only PHA Members are eligible for this special, limited-time offer. offer. limited-time special, this for eligible are Members PHA Only from For a listing of pediatric PH specialists, visit visit PH specialists, of pediatric a For listing Visit Visit
Take PHA with you everywhere you go with a PHA keychain! continued There is no known cure for pulmonary hypertension, hypertension, pulmonary for cure is no known There available treatments many are there fortunately but and progression disease prevent help that Response in PH symptoms. improvement support so to patient, patient from varies to treatment Will the PH get worse as my child gets older? gets as my child worse PH get the Will Most children with idiopathic pulmonary pulmonary idiopathic with children Most development; and growth normal have hypertension another with it is associated when however, be developmental could there condition, medical For to be addressed. need may that issues effort, more significantly takes if breathing example, use they since be normal not may gain weight their to breathe. calories How will PH affect my child’s growth and growth child’s my PH affect will How development? This will vary depending on your specialist, but but specialist, on your depending vary will This to six three every doctor your to see be prepared treatment. and symptoms to monitor months www.PHAssociation.org/Pediatricians PH specialist? our we see should often How It is important that your child be treated by a treated be child your that It is important This specialist. hypertension pulmonary pediatric or pulmonologist cardiologist a pediatric is usually many treats in PH and training extensive has who PH. with children What type of doctor should my son or daughter be or daughter my son should doctor of type What PH? for seeing
PHA’s New Store Item: On Sale Only for Members 8. 7. 6. 5. story
PATHLIGHT SUMMER 2010 www.PHAssociation.org
Passages is PHA’s way of honoring those who have lost their battle with PH, as it has been since the very first Pathlight was published in May 1990. As we learn of patients’ passing, we inform the PH community. PHA extends sympathy to the families and friends of those who are gone but not forgotten; each Pathlight is dedicated to their memory.
Louise A. Afflerbach Sandra L. Doty Mary Jacob William M. Seliger Christiana Atsu Robert L. Dunagan Onalee Johnson Patricia Servis Tera L. Autmon Anne Marie Ets-Hokin Mary K. Knight Debbie Shanks Caitlin Barley Michealla K. Floyd Juanita McCormick Maria Tait Elizabeth A. Brandenburg Lynn Frede Phyllis M. Moore Sarah Tokas Daniel Buckner Mackenzie Jade Grubich Susanna G. Morgan-Bulf Helen M. Valcanoff Carole Champey Rich Gruwell Sarah Peek Debra A. Curran Ashley Hamrick Barbara Powell
The accuracy of this list is very important to us. Please contact the PHA office at 301-565-3004 x762 or Amanda@ PHAssociation.org to have a recently deceased loved one’s name listed in Passages or to report errors or omissions.
I n m e m o r y o f
DONATIONS LISTED WERE RECEIVED Between March 1, 2010, and May 31, 2010. PHA IS DEEPLY GRATEFUL TO THE PH COMMUNITY FOR ITS EXTRAORDINARY SUPPORT.
Mr. Dwight L. Oppliger Take a Look! Sustainers Circle Members Recognized P. V. Raghavan, MD, FACP, FACC Brent and Carol Shelton PHA now recognizes members of our Sustainers Circle in the donations lists. Look for a symbol to see Ms. Peg Y. Vines who has made a sustained commitment to donate to PHA on a monthly basis. If you are not a member of Marge Zakoura-Vaughan and Victor C. our Sustainers Circle but are interested in joining, visit www.PHAssociation.org/Donate/SustainersCircle or call Zakoura Jennifer at 301-565-3004 x756. You may also use the remittance envelope enclosed in this issue of Pathlight. Taylor R. Caffrey Vera Moulton Wall Center for Jack Alfano Mrs. Diane Ballard Mel and Marie Mertz Pulmonary Vascular Disease Ms. Kathleen Mayhew Morris and Harriet Long Ms. Jennifer Vigil Rays Auto Care Juanita Anderson Ms. Wendy Martin Henk Boerrigter Drapes & Fabrics by Vincent Mrs. Tammy Chapman Dr. and Mrs. Daron Scherr Mrs. Kathy Ueltschy Hydra Flow West Terri Anderson Ms. Pamela Watkins Elizabeth A. Brandenburg Allied Paving Company, Inc. Allan and Virginia Cornett Shirley Barnes Ms. Alice Meier JStar Motors Christiana Atsu Walter and Debbie Chambers Jeanette Brant St. Paul’s Lutheran Church Ms. Joyce Nenonene Hope C. Bennett Mr. Dennis M. Brant Mr. William Allen Lloyd Axtell Lisa W. Wheeler, MT Lisa Bretton Ms. Eve Andraso Ms. Delores Aaron George B. Bereny Arthur and Virginia Broadhurst Mr. Joe Andraso Martha Bailey Mrs. Veronika E. Bereny Bernice Buckman Ms. Pearl Asakura Paul Fairman, MD Gloria Biesemeyer Mrs. Christine S. Gurland Mr. William Atkinson John Balio Ms. Kami Biesemeyer Daniel Buckner Ms. Kreithchele Barnard Ms. Charlotte Leavitt Sacha Blair Steven and Suzan Aker Mr. Richard Belliveau Ms. Victoria J. Miyara Mrs. Barbara A. Blair Ms. Viola J. Aker Mr. John Bennett Deloras Barbarito Candi C. Bleifer Ms. Ann W. Coeburn Ms. Susan Bissonnette Mass Mutual Financial Group Ms. Susie K. Kirkland Irvin and Christina Deatley Mr. Jonathan Bower Mrs. Aimee DeLong Wendy S. Bockhorst Ms. Geraldine Flaharty Ms. Brooke Caffrey Kerry K. Bardorf Mrs. Deborah Behnke John and Barbara Fuller Mr. and Mrs. Michael Caffrey Jansen Family Foundation Mr. Stuart M. Berwick Milan and Donna Gorton Ms. Debbie Calcaterra Mr. Brian Bardorf Mrs. Ruth U.M. Henkel Lola Mae and Lloyd Hershberger Ms. Lydia Cao Caitlin Barley Mr. and Mrs. Edward F. Jankovsky, Sr. Leroy and Pat Lehman Ms. Sherry Carver Mrs. Kelly Anglin Ms. Julie Mellenthin Cara and Ralph Lopez Mr. Jose Casian
46 www.PHAssociation.org PATHLIGHT SUMMER 2010 DONATIONS : IN MEMOR Y O F 47
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A F llen E D F en W. W. en a a C t t S A . . E t t ie ie L erly erly in in er riel M. M. riel ra ra orah es es nne nne Maricopa County Republican County Maricopa b b b b b bb A m mb e e e olores olores o o a i nne Marie Marie nne hris hris had had andra andra usan usan rnes eigh eigh Charla and Randy Wright Randy and Charla C Farr Carla Ms. D Albidrez Megan Ms. MD Antonaccio, Olena Caldwell G. Ginger Ms. K. Canfield Shirley Ms. Clifford William Mr. P. Gibbs Jack Mr. Hughes Lorine Ms. Lingo Gerry and Johnny Moses Phil Mr. Moss Wayne Mr. Parcel Toby Mr. Smith Paula and Bruce Kullberg Vicki and Stafford Mark Stallings Sandy Mrs. Welch Michael Mrs. and Dr. Maria De Marco Vincent Mrs. and Mr. D Farrell Ann and Joseph Tina Madam Joy Saville W. Joy Madam White Andrea and Steve R family III H. Knox, Norman The L DeFrancis John Mr. Jeffrey Defrino Anthony Mrs. and Mr. D A. Bucci Gail Ms. E O. Eshleman Dallas Mr. A Boyer Jack and Georgiana Currie Marilyn Mrs. Cutler Iris Mrs. Cutler Jeff Mr. Dolan Stephanie Ms. Vincil Dana Ms. Ja W. Firth Daniel Mr. K Karen and Arthur Broadhurst Broadhurst Arthur and Karen C G. Lignau Willy Mr. D Doria-Djenfer Laura Ms. S Alliance Border Patriots of Committee Guidance Executive Allen Judith and William Baltyn Miroslava Ms. Doty Quetzal Mr. Gangluff Edwin Mrs. and Mr. Jr. Guliuzza, Frank Mrs. and Mr. Haney Marne and Rob Miller Larry Mrs. and Mr. L. Polen Donna Ms. Schaffer Mariana Mrs. Schalin Earl Mrs. and Mr. L. Stoll Elvera Ms. Stott Richard Mrs. and Mr. Sundberg David Mrs. and Mr. Tuttle Lyle Mr. Wrestler Seamus Mr. R Knight Cassandra Ms. Mary Barnett Margaret and John MD Blankenship, Lisa G J. R. Martin and Betty Michealla Basil Elizabeth Mrs. Benson Karen Ms. Ms. Lee Billington Lee Ms. C Sacherman Connie and David S Melady Elizabeth Mrs. Jo SUMMER 2010 PATHLIGHT ick elli t w e tt ivi t oukers aldi eakle C arrea o odinha Y p Y had C C C a C orne
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Terabasso mb oreen oreen i elli ris lena lena uke uke Mr. and Mrs. Francesco Capaldi Francesco Mrs. and Mr. Beverly Al Copabiano Mr. L Ms. Imeh Nsek Imeh Ms. Nsek Angie Ms. O’Day Tracy Ms. Odegard Kurt Mrs. and Mr. Odegard Allison Ms. Parrish Kris Ms. Patrick Lucy Ms. Patrick Angela Ms. Patrick Chris Mr. Pedersen Shala Ms. Peters Crista Ms. Prell Karen Ms. Reinert Georgia Ms. Robes Lisa Ms. Rotondi Caterina Ms. Rudder Jacob Mr. Rudder Daniel Mrs. and Mr. Saugstad Kim Ms. Scarlett Pete Mr. Sesay Melissa Ms. Sinclair Shawn Mr. Smith Gary Mr. Soleno Adena Ms. Sparacino Ron Mr. Sparacino Joey Mr. Sparacino Samantha Ms. Sparacino Kelley Ms. Stalter Kate Ms. Jr. Stell, Gary Mr. Stinnett Steven Mrs. and Mr. Strand John Mr. Strand Dorothy Ms. Sugihara Ken Mr. Sugihara Kara Ms. Sugihara Diana Ms. M. Szwarc Jeane Mrs. Ciara and Ryan Luann, Rick, Toth Gabriella Ms. Toth Carmela Mrs. Tower Len Mr. Trobaugh David Mr. Truelove Edward Mr. Trujillo Hilda Ms. Trujillo Alec Mr. Trujillo Frankie Mr. Trussell Carlene Ms. Trussell Donald Mr. Tyler Victoria Ms. Tyler Jami Ms. Valdez Carlos Mr. Eck Van Christine Ms. Eck Van Cole Mr. Viadero Diane Ms. Wambaugh Kelly Ms. Wearingen Lexi Ms. White Allison Ms. White Jim Mrs. and Mr. Whittier Rhonda Ms. Willis Ella Ms. Willis Jesse Mr. Willis Ava Ms. Willis Colleen Ms. Wojciechowski Lou Betty Mrs. Mark Mr. Kelly Ms. Zappia Marcus Mr. Ziegler Kristina Ms. E Rist Cynthia and Robert K Civitelli Krysten Ms. D Rainha Portuguesa Sociedade J. Brunner Dellenbach Cathy Ms. A. Silva Patricia Ms. A. Silva Manuel Mr. K Cornett Virginia and Allan K Cote Anna and Bob
Mr. Travis Chapman Travis Mr. Coelho Kim Ms. Collard Heather Ms. Cruz Joe Mr. Curfman Susan Ms. Curfman Laura Ms. Dadabhoy Abeda Ms. D’Antonio Maria Ms. Davidoff Andy Mr. Day Jill Ms. De La Rosa Brenda Ms. De La Rosa Rene Ms. De La Rosa Brianna Ms. DeLeon Arturo Mr. DeLeon Michael Mr. Dietz Marisa Ms. Dumaine Hannah Ms. Dumaine Jonathan Mr. Echavarria Johnny Mr. Ferguson Justice Mr. Ferguson Mark Mr. Ferguson Jack Mr. Ferguson Susan Ms. Ferone Adam Mr. Forgay Naomi Ms. Garcia Anthony Mr. Giess Russell Mr. Giess Christian Mr. Gledhill Josh Mr. Gomez Raquel Ms. Gomez Robert Mr. Gomez Nicole Ms. Goodwin Taylor Mr. Graham Lisa Ms. Graham Alexa Ms. Graham Brad Mr. Graham Caleb Mr. Graham Peyton Mr. Guerrero Michael Mr. Guerrero Patricia Ms. Gust Bradley Mr. Haluszczak Kelly Ms. Church Lutheran Hephatha Hestehave Kjeld Mr. Hiatt Barbara Ms. Hicks Cara Ms. Hicks Nancy Ms. Hines Sueann Ms. Hocking Tim Mr. Holguin Jesse Mr. Holiday Chase Mr. Holiday Alyx Ms. P. Honma Steven Mr. Jarobe Christine Ms. Jenkins Taylor Ms. Jenkins Carmela Ms. Johnston Joni Ms. Jones Megan Ms. Jones Heather Ms. Jones Nancy Ms. Kanbar Jenah Ms. Kierulff Kyle Mrs. and Mr. Kierulff Jaden Mr. King Janelle Mrs. Legge Jim Mr. Liby Nicholas Mr. Lieber Kurt Mr. A. Manoff Sari Ms. Martinez Roman Mrs. and Mr. Martinez Aiden Mr. Martinez Adara Ms. Massey Amy Ms. McGrady Megan Ms. McGuire Scott Mrs. and Mr. McGuire Ryan Mr. McGuire Eryn Ms. Medina Amanda Ms. Meyer Emily Ms. Meyer Bill Mrs. and Mr. Meyer Allison Mrs. Mosier Chase Mr. Mudd Jamie Ms. Munoz Terry Ms. Naderi Anahita Ms. Nash Andy Mr. Noster Elaine Ms.
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Ms.Kathleen M.Latacz TheLansey Family Ms.Lisa Kasparian Mrs.Laura B.Kallenberg Mrs.Peggy Jones Ms.Susan G.Jaggi Ms.Karen Huther Ms.Carol M.Hohauser RobertandJudith Herman Ms.Ethel Ms.Doren S.Greene MicheleandDouglas Gilbert Mrs.Barbara V.Farrell DeniseandJohn Ensslin FredJean& Halstead andDoreen Ms.Karen Donovan Mrs.Diane DeSena DonaldandJoyce DeRuider Mrs.Judith L.Cutney Mrs.Karen Caldas Ms.Karen Bryan LoisandWayne Bockmann Ms.Virginia H.Aumuller Richard,Kelley andCory Auerbach Ms.Susan J.Abranovic ADPFoundation S Mrs.Judith A.Lisante Juliane Mr.andMrs. TomF.Linnen, Sr. Mary Ms.LivColeman V Mr.Mark Lapidus Tani BillandIone Thomas Ms.Caroline F.Sator Mr.andMrs. Walter Pasterski OscarandDorothy Meneses MikeandLiz Mehaffy Ms.Josephine K.McGough MikeandTerry Kupiec Ms.Mary Flisnik BillandHelen Flannery Mrs.Janet Fitzpatrick Ms.Jean M.Dullin RobertandZelma Campany Mr.Osama Alshaykh Mrs.Camille Addeo AcaciaHome Care WhitesboroBoys’ Soccer Club Mary Mrs.Marie Kish N Mr.andMrs. Frank Koppelman Dr.andMrs. Mitchell Koppelman MineralsTechnologies K MissErinn Overton WilliamandSusan Nelson Jaco Mr.andMrs. Gordon Lanum MarleneJ. Rev.William R.Keeffe E Mr.IanKawas Pa Mrs.Deborah Wienold S PaulandAlice Heinz L Mr.David P.Justin Ja PaulFairman, MD I Mrs.Camille E.Robertson DonaldandPatricia George IreneandWayne Elledge GaryandMargaret Blankers RobertandBetty Blankers O Mrs.Dorothy J.Jeter H Ms.Jacqueline D.Javor MichaelJavor solynJones isa lsieM. irginiaM. helley usan enne . naleeJohnson a m D m t Edge alie esJus eanJe ela b A K
. L K . t A www.PHA ssociation.org F K innen h K . . . A L K annas K K o A K K . A a Y a eeffe nigh t pp . t e L arass . p . Hamilton. w in L er t isan K L K idus is chu el arson as ers ish b t m ona t m an m e an Ms.Ruby Temme EileenandMike Schultz Mrs.Stacy Regnier Mr.andMrs. Pupillo andMr. and Mrs. Mr.Jerry Novak TinaandMatt Meyer Mrs.Barbara T.McElroy Ms.Michelle Leon DianneandLawrence Kremer Mr.andMrs. Louis Klesath Ms.Sarah E.Edwards MichaelMc Ms.Christine Garcia D JamesandLalla Lowery Juani LisaW.Wheeler, MT Ms.Jean Sheridan Mari Mrs.Donna R.Matheis L Mr.Dan Mr.andMrs. Steve VanWormer Mrs.Jeane M.Szwarc Mrs.Tania K.Suares Mrs.Anita Smith Ms.Susan N.Smith Mrs.Katrina Sherfey-Hinds Ms.Whitney Rock MarilynI.Nolan, RN Mr.Jack Nino Mr.Doan Thuc Nguyen Ms.Jana L.Munk Mr.Rodney McKimmey Mr.John P.McInerney Mr.John McInerney Mrs.Terese E.Martinez Mr.Marlin Maifeld Mr.andMrs. Daniel A.Leivas Mr.John C.Lawyer Ms.Maria Langarica Mr.Patric E.Knapp Mr.Matthew E.Kinkenon Mr.Carl Jones Mr.James R.Jackson Mr.Karl P.Iskat RandeandPatti Howell Mr.Anthony E.Green Mr.Gerald F.DeSimone Ms.Dawn M.Clifford Ms.Angel J.Carter-Berndt FrankandCarol Bruno Mr.William Bockhorst Mr.Dean A.Berndt Mr.Robert Becker Ms.Jo-Lynn Acrey StimsonEnterprises, Inc. CanyonGate Medical Group, LLC UnitedTherapeutics Corporation IGT H GaryandBarbara Carter S Ms.Gayle J.VanAuken Teresa Mrs.Joanne TheBolt-Jonker family AntoinetteandBrett Walder WillandLinda Vitti andfamily Mr.andMrs. Bill Vander Eems TimandMedea Valdez Mrs.Christine Thomson DesireeStokem andFamily MarcellaStaropoli andFamily Mr.Nicholas Spina KirbyandNerissa Smith RonandNancy Sietsma Ms.Linda Reid TheOcchipinti Family Mr.andMrs. John Nicol Mrs.Tina Marie Montone Ms.Anne Marie McCarthy JoAnnand Kate Looney JoeandShirley Lisbona Mr.andMrs. Michael Levine eahMa andy ea onMc Howell t herMassey b t e a Mca L t F A ucas Y h t adden . anez heis L S C ovell . Mc. K Y or enzie ankovich m C ick ar t hy Ms.Norma K.Wood D Ms.Karis Kranker Mrs. Mr.Daniel M.Puopolo A BarryBoilson, MD K Mr.Dave Wilson JessicaPor Mr.Valts Pladars Mech CammandSue Epstein L MissShirley Schultz L Ms.SueH.Kothmann Pa Mrs.Evelyn L.Haught H PeterandAdele Cooney TimandRita Colson Mr.Daniel Boyd Mr.Brian Blasland Osmose S MarleneRabinovitch, MD Mi Mr.Leon Pappas Willia Mrs.Shirley Newman Melvin Mrs.Carla Bynon S Mrs.AnnT.Firby L Mr.andMrs. Frederick Ehemann Joanne Ms.Margaret Tinsley Mr.andMrs. Greg Mollner Ms.Pamela Kurtz Joe,Marcia, Peter andEmily Kurtz Mr.andMrs. Patrick andJanet Hayes Mr.Michael Hasson Mr.UliHaller Mrs.Marilyn Haberlach PeterandMaggie Bentley Ms.Helena Baldasty Mr.andMrs. Robert Babitsky S Mrs.Barbara J.Nickels K Mr.Robert A.Nastanovich all MarkBaldwin andCarla Olson Jose Ms.Margaret Nabors I JulieMuszynski andDaniel Wostbrock MichaelJ.Muszynski Ms.Alice E.Sierota F MottCharitable Trust Mar RebeccaM. Jennifer Mrs.Bonnie Risley S Mrs.Mary M.Joy C DanielandChristine Santo Mr.andMrs. Daniel Santo Ms.Priscilla Sanders Ms.Victoria J.Miyara Ms.Christine A.McCreary Ms.Charlotte Leavitt Mr.andMrs. Peter J.D’Anna Mr.andMrs. LeoA.Damren DavidCometz andJacquelyn Egan Ms.Belinda Boardman G Mr.TomVenetis Mr.Robert Treat Mr.Eric Thoele r illianPiasecki ynnPhelan arryPaige ern arahPeek ondraPa haron usanna arolineJ.Morgan n ariPosekany aren elen a oris m t t b t p chelW.Pa 2010 SUMMER PATHLIGHT riciaPels a honyPuo rielleMiyara t assedon j p heP orie t R N L h m hildM.Pladars L . Mur. C ainey a L . N S . Pellegrino. C M. . b A R . e . N E H ors G . avasio wm N D O . Moser. elson riends . Morgan-Bulf. N pp as . Mo. N Y lson t p icol ates,RN ickels er hy p an as t tt olo anovich tt erson w hohave Dr.andMrs. Mitchell Koppelman MineralsTechnologies K Mrs.Natalie W.Segal Margy PamandJimi Colon Tiffany DhrumanSanghvi K LindaandE.J.Sadler D Mrs.Sandra K.Lee Am Mrs.Suzanne Nowell Mr.William T.McLaughlin, Jr. Mr.andMrs. Florin Chirla A KamleshSingh D Mrs.Kathryn Manley Margare Mrs.Kirsten L.McCallion C Mr.andMrs. Thomas L.McKeown D Mr.Kenneth Boldizar Mrs. Mrs.Leslie West Mr.andMrs. Albert Uziel Mrs.DebAllen Tobin AlvinandMarlene Temple Mrs.Lois Suski Ms.Nancy Scanlon Mrs.Lynne Saul andMr. Aaron BryantandValerie Rudd Mrs.Janet A.Robuck Mrs.Jane Reece Mr.andMrs. Timothy Reece KarmaandJim Pritchard Mr.Donald Murphy Mr.Martin Moore Mr.Kurt Mitchell Mrs.AmyF.McMullen Mr.andMrs. Michael S.McAfee Dr.andMrs. Roger Mattson Mr.Bryan Magleby Mrs.Patricia D.Lord Mrs.Jane Keicher Mrs.Karen Jankowski Mrs.Lori Humble Mr.andMrs. Donald R.Horn MarilynHollingshead andErnie Mr.Douglas N.Hix Ms.SueHess Ms.Kristi Gillespie BudandMargaret Gibson Mr.andMrs. William Cox Ms.Arlene F.Corkhill Mrs.Gina M.Colson Mr.RodBuckles Mr.Marlow Blanchard Mrs.Valerie Bertoch Ms.Joni L.Armstrong MartekGlobal Services, Inc. K Mrs.Carol Cochi D Ms.Julia J.Marlar N LisaRoot, MD Mr.Richard Miller-Murphy Mr.Jeffrey Jacob Ms.Joyce M.Fernicola NancyandMichael Farrell Ms.Janet Ellwood EducationCouncil ofSt.Vincent Martyr St.Vincent Martyr HomeSchool & Teresa Mr.George H.Reynolds Bar Ms.Delores Aaron L
ois harlo nna elly is ris icky ana onaldJ. e ora b JohnsonSaul Wheeler School Assoc. y m orahM. b t ore R R ara a R R S R u ay R S oe adler . R m o S ei o tt D A R egal- o b b an . b S b . t
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elpline: 1-800-748-7274 Helpline: PH
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ski w in cher w t m oodin ciecho G j er ooge ood G ranai G ancey G illa G Y . . h h G aleski D t a a . . a a Z t e E ara B. B. ara b tt er b Deputy Sheriffs Deputy b o elen elen olin Wren olin helle helle liza Melanie J. J. Melanie Mr. John Stonebarger John Mr. Towle Deborah and Roger Waddell Daniel Mr. MT W. Wheeler, Lisa M. DaSilva Amanda Mrs. Mary Hoffman Debra and Timothy Bar Gordon Ann Mary Mrs. S Ms. Laura B. Wilson Laura Ms. Wo Michael Palmas Las Avalon County of Orange Association Corporation Therapeutics United Inc. Scripts, Express Supply Sanitary Waxie Andersen Paul Mrs. and Mr. M. Branigan Kathleen Ms. E. Carr Ralph Mr. Carr Kathy Ms. C. D’Heilly Dennis Mrs. and Mr. K. Hindman Joan Mrs. U. Igawa Asako Mrs. K. Jackson Jerel Mrs. and Mr. Kallmeier Ernest Mr. Kelley Daniel Mr. Kimble Linda Ms. M. Lee Jill Mrs. Nino Jack Mr. H. Campbell Richard Mrs. and Mr. Peruman Amala Mrs. J. Rucker Gail Mrs. L. Salay Susan Ms. M. Schreck Merci Ms. Simpson Judy Ed and B. Wilson Laura Ms. C Epstein Sue and Camm Cornett Virginia and Allan H Tucker Anita and Temple E Mr. John Stonebarger John Mr. Towle Deborah and Roger Waddell Daniel Mr. MT W. Wheeler, Lisa Brigi Skyer Nicole Ms. III G. Whitaker, William Mrs. and Dr. R Aldrighetti Rino Mrs. and Mr. Beardsworth Margaret Ms. M. Bernstein Steve Mr. Butts Amanda Ms. Carman Jennifer Ms. Castro Debbie Ms. A. Conforti Louise Mrs. III Cottrell, John Mr. Cudzilo Mary Margaret Mrs. Cunha Marie Anne Mrs. Davis Katie Mrs. Dickler Christine Ms. Donald Christa Mrs. Fulton Roice Mr. Giannetti Vicki Mrs. Mr. and Mrs. Richard Campbell H. Richard Mrs. and Mr. Peruman Amala Mrs. J. Rucker Gail Mrs. Salay L. Susan Ms. Schreck M. Merci Ms. Simpson Judy Ed and PH Helpline: 1-800-748-7274 and MAY 31, 2010. ski w an ski m w tt ciecho ranz ried j arcia F F one G
. . . . t . . ciecho C R arne j A Wo G w ires F he tt Deputy Sheriffs Deputy Deputy Sheriffs Deputy aroline aroline lise lise Mr. and Mrs. Jerel K. Jackson Jerel Mrs. and Mr. Kallmeier Ernest Mr. Kelley Daniel Mr. Kimble Linda Ms. M. Lee Jill Mrs. Nino Jack Mr. H. Campbell Richard Mrs. and Mr. Peruman Amala Mrs. J. Rucker Gail Mrs. L. Salay Susan Ms. M. Schreck Merci Ms. Simpson Judy Ed and Stonebarger John Mr. Towle Deborah and Roger Waddell Daniel Mr. MT W. Wheeler, Lisa B. Wilson Laura Ms. Wojciechowski Lou Betty Mrs. Ma E P. Friedman Eric Mr. Jennifer Garcia Christine Ms. Branda Inc. Service, Electrical Clark Asbury Kim and Tom Bandy Susan and Steven B. Carson Dorothy Ms. Carter Barbara and Gary Conner Charlene and Herschel Denney Lorrie and Richard Duffield Linda and Ken Nadine and Bob Fender Tammy and Richard R. Garnett Mrs. and Mr. Harris Robin and Christopher RN Meads, Carol A. Roberts Pat Ms. Snead Julie and Scott K. Tilley Gregory Dr. F. Turner Douglas Mr. Weaver Cheryl and Dale Avalon Las Palmas Las Avalon County of Orange Association Corporation Therapeutics United Inc. Scripts, Express Supply Sanitary Waxie Andersen Paul Mrs. and Mr. M. Branigan Kathleen Ms. E. Carr Ralph Mr. Carr Kathy Ms. C. D’Heilly Dennis Mrs. and Mr. K. Hindman Joan Mrs. U. Igawa Asako Mrs. Palughi Liz Ms. Priscilla Franz Douglas Mr. C Mr. and Mrs. Jerel K. Jackson Jerel Mrs. and Mr. Kallmeier Ernest Mr. Kelley Daniel Mr. Kimble Linda Ms. M. Lee Jill Mrs. Nino Jack Mr. Jerry Wo Jerry Avalon Las Palmas Las Avalon County Orange of Association Corporation Therapeutics United Inc. Scripts, Express Supply Sanitary Waxie Andersen Paul Mrs. and Mr. M. Branigan Kathleen Ms. E. Carr Ralph Mr. Carr Kathy Ms. C. D’Heilly Dennis Mrs. and Mr. K. Hindman Joan Mrs. U. Igawa Asako Mrs. SUMMER 2010 o n o r o f h n PATHLIGHT I t e t an acos roek ein t m zel b t tm ein t t s srey is nsend olsher ein hei s t alcanoff . . Burger U . . Wilson onnor t C t w Ep V . . Wilhi . . D S C s ein onoughue lsen Ep L L . . We t . . Wiley Trau E D usansky . . Buchanan A s Ep t N
L D Ep er y y ricia ricia b t mm anielle anielle icole icole iley iley o elen M. M. elen lexa Tuni lexa harles harles olleen a hloe hloe hirley hirley arah arah ue hirley hirley eronica eronica rances Tren rances inda inda Ms. Tracy Corcoran Tracy Ms. A. Sypien Debra Ms. S Epstein Sue and Camm R Myers Thomas Mrs. and Mr. C J. Strang Carl Mr. V E. Hughes Maryann Ms. C GlaxoSmithKline Enslin Beth Mary and Singer Tony S M. Timothy Mrs. and Mr. Donoughue Abb Lewis Melanie Ms. N D E. Epstein Shira Ms. Tolchin David Mr. S Turkheimer Allan and Sherrie C Turkheimer Allan and Sherrie Ms. Donna Henke Donna Ms. Henke Courtney Ms. Needham Christiana Ms. Wetzel Mark Mr. L Jr. Wiley, Kenneth Mrs. and Dr. S Dr. Linda Trautman Linda Dr. Treece Bonnie Jenkins Kathleen Ms. LaCount Terry Mr. F Aldrighetti Rino Mrs. and Mr. H. Dern Adrienne Ms. A R. Wheeler Daniel Mrs. and Mr. Jeffrey Kerry Douglas Mr. H K. Haney Evelyn Mrs. E. Kelbel Margaret Ms. Linnan Marvel Mr. U. Palda Alice Ms. L. Smith Joy Mrs. Sommers Kelley and Joan Jay, K. Sweet Karen Ms. Wer John Epstein Sue and Camm C A. Wilhite Raymond Mr. Pa Church Baptist United Springs Russell Church Baptist Point Pleasant New Bridgman Pamela Prof. Gentry Alma and Chubb Timothy W. Gentry Alma Ms. Hall Doris Mrs. A. Hall Judy Ms. Hall Barbara Ms. Hodge Raina Mrs. K. Rush Pamela Ms. Sherman Gary and Loris E. Wells Mitchell Mr. L. Wilson Janet Ms. Wilson Carol and Ronald Wilson Marvin Mr. Mr. Nathaniel P. P. Holzer Nathaniel Mr. Jordan Shelby Ms. Lake M. Maureen Mrs. To Wayne Townsend Teresa Mrs. R DONATIONS LISTED WERE RECEIVED Between M arch 1, 2010, t an m i ick m an tt ann w m . . D. Michaels m oung z t eliger er X ead . . Boehk m Y t mm are S heridan A er w u . . Terry er ervis b S St evens b t ngiollilo llen b S H . . hanks St h h Brigha . . Tenney il A A M. M. St D t ie
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Negotiators Accountants, LLC Accountants, Jozsa Seaboyer ily Broadhurs ily b t t t bb b uar avid Bar avid e M. aniel e icole Bloh icole o enry enry a elly elly rnold J. Ti J. rnold arah Tokas arah liza Leonard and Linda Conte Linda and Leonard Czachor Kathleen Ms. Kondry Joyce and John Waldie Robert Mrs. and Mr. Kondry Kevin Mr. Ms. Peggy S. Dwiggins Peggy Ms. E F. Goldfein Miriam Ms. Em Ms. Dolores M. Saunders Dolores Ms. K GE Foundation Crimi Frank Mrs. and Mr. Bre Bailey Broadhurst Arthur and Karen Monica Monica Marino Peter Mr. R D Berwick Kathleen Ms. N Ms. Mziya Weber Mziya Ms. Baker Mike of Hostage Association California Mary and John Garvey John and Mary St Willia Public Certified & Choi Tedesco Bullen A. Janet Mrs. Cirillo Frank Mrs. and Mr. Espinoza Carlos Mr. Patton Virginia Ms. D (ID) Valley Treasure Group: PH Support D Sheridan Jean Ms. K H Foundation Pfizer Silbermann Susan Ms. Bonnie Mr. and Mrs. Russell C. C. Brown Russell Mrs. and Mr. Pa Technology Arxis Goodman Jan Ms. A. Margaret and J. Sheridan Daniel Koppelman Frank Mrs. and Mr. Jean Jean Association Condominium Whitegate R. Cummings Donna Ms. Freitas Gerry and Pat E. Leonard and A. Jordan Margaret T. LeMay Lydia Mrs. March Marjorie and Philip Dr. A. McGee Patricia Ms. Mrs. and Mr. Smethurst Mike and Shirley Helayne Ms. D A. Biesadecki Christine Ms. Fedak Angel B. Kmetzo Esther Ms. Pa Mr. Robert W. Steadman W. Steadman Robert Mr. W. Stutzman John Mr. Tai Maria K. Terry James Mr. A Ms. Elaine G. Jackson Elaine Ms. Jennings Wendy and Lewis Snyder Terry Mr. Mary H. Timm Arnold Mrs. and Mr. S Ltd. American, Sunchase Culbreth Kenneth Mr.
Ms. Denise Granai Anna Jeter Rita Orth Ampco Marketing, LLC Mrs. Nancy Gruber TCF Foundation Judy and Don Anderson Mr. and Mrs. Frank Bass, Jr. Ms. Jean Gubeno Mr. and Mrs. Stephen T. Aldritt Rodolfo M. Pascual Patrick and Colleen Hosford Ms. Carsten Hailey Harry and Shirley Winters Mrs. Connie Cocks Mr. Hank Williams Ms. Jessica Hardy Honey Kennedy University of South Alabama P. Jack Stibbs Mr. Brian Heytink Ms. Susan Kennedy Patients Ampco Marketing, LLC Miss Jennifer M. Kaminski, MSW Roxanne L. Koerber Karen A. Fagan, MD Mr. Hank Williams Ms. Meghan Kelly Ms. Pamela R. McKay Paula A. Patty Karla Stutsman Mr. Arsène Koissy Drew D. Krajeck Ms. Jane Randolph Mr. and Mrs. H. R. Gentsch Mrs. Cristina Lu Ms. Mary A. Grabowsky Samantha Peskin Stephanie M. Terrell Ms. Megan Mallory Jason and Mariska Krajeck Mr. Joseph N. Peskin Mr. Paul Terrell Mrs. Jillian McCabe Sean Lehosky Cynthia Pickles Susan K. Tointon Ms. Nancy Riedl Mr. and Mrs. Michael Lehosky Mr. Timothy C. Pickles Mr. and Mrs. John A. Awood Ms. Tracy Settle Cheyanne Lennard Sonya L. Queen Terri Tolle
onations Mrs. Anita Smith Mrs. Sheila Ratzlaff Mrs. Sonya L. Queen Ms. Marcele See Ms. Alicia Sovart Amy Long Arthur Raney Daniel Torres Mrs. Janice M. Stockelman Ms. Julie Long Mr. Darin E. Raney Mr. and Mrs. Jose A. Narvaez Ms. Staci Thompson Annette S. Markin Robert E. Rodich Sherrie L. Turkheimer Carol E. Vreim, PhD Mrs. Karen M. Ellis Mr. and Mrs. James B. Loehr Camm and Sue Epstein Ms. Rachel Wheat Mr. and Mrs. Mark D. Holtzman Lori L. Rodriguez Harriet Turkheimer Ryan Grann Mrs. Cherie L. Metschke Mrs. Lori L. Rodriguez Camm and Sue Epstein Daren & Kerry Grann Carol and Alan Parsow Michael Ruotolo Sherrie and Allan Turkheimer Savanha Groebner Robert McCully Mrs. Doreen Ruotolo Julia P. Vandenburg Mr. and Mrs. John A. Awood Jeffrey S. Sager Mr. and Mrs. John Glowacki G E N E R A L Mrs. D Michelle C. Eberhart Ms. Theresa L. McGuire-Gerow Sandy McEwen Mr. William J. Wetter Corinne I. Wheeler Mrs. M. Lynn Ralston Lisa W. Wheeler, MT Carol A. Skeens Ms. Delores S. Sloan Ms. Jamie L. Terry Elvira McLemore Dolores and Charles Curtis Lynn H. White Mrs. Jacqueline S. Travers Mr. and Mrs. Keith McLemore John R. Sperando Mr. Roger C. White Ms. Shermane Verduzco Jessica McMillian John and Antoinette Sperando Gail Willner-Giwerc Mrs. Jeanine Wakefield Ms. Jennifer Bartel Joanne and Kenneth Schmidt Ms. Susan Bargemann Mrs. Lois A. Wullenweber Dwight Moody Joanne Sperando-Schmidt Deborah G. Wilson Cinnamon S. Heller Mr. Elrid M. Moody John and Antoinette Sperando Mr. and Mrs. Jim P. Wilson Ms. Amy M. Brown Kimberly Nunes Dolly Stevenson Betty Lou Wojciechowski Terrence Jen Ms. Myrna Courtney Dr. and Mrs. John M. Packard Lisa W. Wheeler, MT Ms. Lilian H. Leung Dana J. O’Hara Emily Stibbs Lori Wylie Ms. Lorraine Joseph RGL Realty Group, LLC Ms. Dora A. Reynolds g e n e r a l d o n a t i o n s
DONATIONS LISTED WERE RECEIVED Between March 1, 2010, and May 31, 2010. Mrs. Cheryl Abbott Ms. Mary T. Bankard Ms. Kris Best Mr. James F. Buck Ms. Ruth Aberasturi Mr. and Mrs. Mark Banny Mr. John C. Bidleman Ms. Birgit B. Buckley Ms. Ida Aberman Mr. and Mrs. David Barbaretti Mr. and Mrs. David Bigley Mr. Richard S. Buckner Accredo Therapeutics Inc. Mr. Duane Barclay Mr. Edwin M. Bigsby, Jr. Ms. Laura M. Buckon Ace Landscaping Mrs. Virginia K. Bardi Mr. Stephen A. Bitler Ms. Hollie Buendel Ms. Kristen G. Acri Col. and Mrs. Benjamin H. Barnard Bitterroot Anglers Fly Shop Ms. Lynda Burdick Actelion Pharmaceuticals US, Inc. Mr. James Barnes Ms. Patricia A. Black Ms. Cory H. Burger Ms. Debbie Adams David and Barbara Barra Black Gold Golf Club Ms. Jan Burger Mrs. Danielle Aguirre Mrs. Kristy Barron Ms. Antoinette V. Blaine Mrs. Violetta M. Burgess AJK Consulting Services Inc. George and Helen Barrow Mrs. Nelda L. Blair Mrs. Karen M. Burgholzer Ms. Helen E. Albright Robyn J. Barst, MD Mr. Gerald J. Blake Ms. Dolores Burke Mr. and Mrs. Jerry Alderson Ms. Lori Barth Mr. Barry D. Blanton Mr. Jason Burkett Mr. and Mrs. Rino Aldrighetti Patricia and Richard Bartkowski Mrs. Zola M. Blay Dr. and Mrs. Morris Burkwall, PhD Ms. Penelope J. Allan Mr. and Mrs. Allan D. Bartolome Mrs. Mary L. Blevins Ms. Rochelle L. Burman Miss Jennifer Allen Mr. Dennis W. Bartoskewitz Ms. Nicole Bobley Mr. Henry E. Burnell Mrs. Carla Allison Mrs. Rachel Basista Mr. William Bockhorst Ms. Carol A. Burns Alpha Phi Omega – Towson Ms. Yvette Baskin Ms. Antoinette Boener Ms. Lorraine Burns University Ms. Donna T. Bass Mr. and Mrs. Edward Bohn Ms. Kathy Buro Mrs. Cyndi Alvarado Mr. Douglas R. Bassil, Sr. Mrs. Roselyn Boldman Miss Brittani Burress Ms. Susanna M. Alvarez Ms. Olivia Bataal Ms. Emma Bonanomi Bush Law Firm Mrs. Julie H. Ambler Ms. Marcella M. Bateman Mrs. Wendy Bond Ms. Laura Butcher Amegy Bank of Texas Ms. Luz E. Batista Mr. Bruce Boss Ms. Dawn Butler Ameripine Environmental, Inc. Mrs. Sha Batt Mr. Douglas S. Boucher John Hyslop and Carey Butlien Ms. Patricia Ames Mr. Stephen Bauer Ms. Louisa Boudreaux Ms. Susan W. Butters Mrs. Anita Amira Ms. Deborah Z. Baugh Miss Wanda L. Boult Ms. Amanda Butts Ms. Doris Anderson Seymour and Gloria Baum Mr. Ronald A. Bourbeau Ms. Roslyne Cabrero Mark W. Anderson, DDS Bayer Healthcare Pharmaceuticals Inc. Ms. Bonita L. Boutin Mr. and Mrs. Michael Caffrey Mrs. Peggy A. Anderson Mrs. Nunnie S. Bea Mr. John D. Bowen, Jr. Ms. Senga Cairns Ms. Valerie Anderson Mrs. Angela Beadle Mr. Ray Bowers Mr. Frankie Calender Mr. Sam Andraso Mr. Simon Beard Mrs. Bernece G. Boyd Mr. and Mrs. Albert Calise Sister Carmen Anzellini Ms. Catherine L. Beason Ms. Barbara A. Brabec Al and Rhett Calise Applied Materials HQ Group Mr. Brett Beaty Ms. Jean Braun Mr. Timothy L. Calkins Mrs. Lesa F. Aramburu Ms. Brenda Beaver Mrs. Mary M. Braun Ms. Emily Calloway Dr. Paulina Z. Arancibia Mr. John M. Bednar Mr. R. John Braun Mr. Chuck Campbell Ms. Shirley Armstrong Ms. Jennifer Beecher Mrs. Patricia Brenneman Mr. and Mrs. David D. Campbell Ms. Darcie Arnold Ms. Marja Behar Mrs. Loretha Brethour Ms. Ninette Campbell Mr. and Mrs. John B. Arnold Ms. Wendy Behr Ms. Alicia Melina Bridgewater Mrs. Priscilla B. Campbell Ms. Jennifer Ashley Mrs. Marjorie M. Behrens Barry and Elizabeth Brigham Ms. Vikki L. Cantrell Ms. Suzi D. Askew Jennifer Beier, RN, NP Ms. Cecelia Brinke Mr. David A. Cantu Ms. Euphemia Aspinall Ms. Medeta Belke Arthur and Virginia Broadhurst Capistrano Center for Performing Arts Thomas Assiff, PhD, and Marilyn Mr. and Mrs. Darren Bell Mrs. Sonia Brocko Mr. Aaron L. Capps Assiff Mrs. Lora Belles Mr. and Mrs. C.J. Brodbeck Cardinal Health Foundation Inc. Mr. Jonathan Attaya Ms. Bunny Benditz Ms. Margaret H. Brofman Mr. Lee J. Cardon Mr. Ron Austin Ms. Michelle S. Benoit Mr. Gene Bronski Mr. and Mrs. Gary R. Cardwell Mrs. Debra K. Avery Ms. Joan Benson Mr. Buddy Broussard Mr. David N. Caress Mr. Robert R. Avery Mr. and Mrs. Mike Berardi Mrs. Christina M. Brown Ms. Lori Carey Mr. Don R. Babick Ms. Christine Bergan Ms. Joellen Brown Mr. Marcus Carr Ms. Anne M. Babina Mr. Glen R. Bernstein Ms. Pamela Brown Ms. Debra Carrabbia Dr. Christina A. Back Mrs. Nancy A. Berrigan Mrs. Penny Brown Ms. Renee L. Carter Diane and Arnie Baker Mr. and Mrs. David Berry Mrs. Debbie Browne Col. and Mrs. Gary V. Casida Mr. David Baker Mr. Stuart M. Berwick Mr. Walter G. Browning Ms. Debra Castiglia Mrs. Mary Beth Ball Mrs. Laura Besler Ms. Gloria Bruce Ms. Debbie Castro Mr. David L. Balser Mrs. Sara Bessey Ms. Pat Brugioni Mrs. Shawntai Castro 50 www.PHAssociation.org PATHLIGHT SUMMER 2010 GENERAL DONATIONS 51
Johnson Ms. Stacy Heath Stacy Ms. M. Heenan Matty Ms. Heffernan Rose Ms. L. Hendricks Robert Mrs. and Rev. Hendrickson Karen Mrs. Hendrix Josephine Ms. B. Hendrix Peter Mr. Henry Daniel Mr. M. Herbstritt Margaret Ms. Hereshko Michelle Mrs. J. Hernandez Patrick Mr. Herrera Bill Mr. O. Hersey Marion Ms. L. Hess Deborah Ms. Hess John Mrs. and Mr. Hess Jean and Alan A. Hess Leslie Ms. Jr. Hicks, Carl Mrs. and Col. Lt. Hies Amy Miss F. Higgins John Mr. F. Higle Maureen Mrs. Hill Christy Miss Hill Jason Mr. Hilling Lana Ms. R. Hilty Lucille Mrs. Hineline Clarke Mr. A. Hlavaty Cheryl Mrs. Ho Ngoc Mr. A. Hoff William Mr. Hoffman Dale Mr. Hogaboom Claire Ms. L. Hoglman Karen Ms. RN Hohsfield, Robin J. Holian Michael Mr. Hollman Ruth Mrs. Holmes Frances Ms. Holt Ann Debra Mrs. P. Homan James Mr. Honaker Michael Mr. Hone Beth Ms. A. Honeycutt Cheryl Mrs. Hook Brian and Bonnie Hooven Marjorie Ms. MD K. Horiuchi, Todd M. Horn Helene Ms. Cruises Hornblower Horne Meg Mrs. J. Horowitz Andrew Mr. Horowitz Jerald Mr. House Ruth and Garland H. Houx Sally Mrs. F. Howd Janice Ms. L. Huber Tracy Ms. Huebner Ann Ann Betty Ms. M. Huffman Marilyn Ms. Huggins A. Joy Ms. Hughes Amy Mrs. Hults Teyah Ms. J. Hummel Ursula Ms. Jr. O. Hunt, David Mr. Hurd Ronald Mr. Hushek Thomas and Eve L. Hutchins Deanna Ms. Iacono Eleanor and Ignatius Iannone Eugene Mr. U. Igawa Asako Mrs. Mr. and Mrs. Mark R. Jordan Mark Mrs. and Mr. L. Jordan Marsha Mrs. Ms. Kathy Ilano Kathy Ms. Ingram B. Jay Mr. Inlow-Patterson Patricia Mrs. Systems Infusion IntraPump LLC IntrisiQ, Ivanko Aleksandra Miss Iwami Ayako Jackson Dee Mrs. James Jasbir Mrs. L. James Sylvia Ms. M. Jammal Therese Ms. Janzer Jennifer Miss Jender Robert Mr. Jeskin Bernard Mrs. and Mr. Jessup Marsha Ms. M. Jeter Janice Ms. Jeter Mark Mrs. and Mr. Company JJF J. Johannsen Laurie Miss J. Johansen Stephanie Mrs. D. Christopher Mrs. and Mr. Johnson Dave Dr. D. Johnson Jeremiah Mr. MD Johnson, Larry Johnson Sandra Mrs. Johnston Colin Mr. A. Jonas Kathleen Ms. A. Jones Christine Ms. Jones Smith Crystal Ms. MD Jones, Diana Jones Glenn Mr. L. Jones Isaac Mrs. and Mr. LLP Walker Jones Jonnsson Lisa Ms. Jordan Marianelle Mrs. PH Helpline: 1-800-748-7274
Services, Inc. Services, Mr. Jason Gander Jason Mr. Ganly Joshua Mr. LLP & Binney, Earl Ganntt, K. Gansburg Nancy Ms. Garcia Christine Ms. Garcia J. Patrick Mr. V. Garcia Robert Mrs. and Mr. Garland Mike Mr. H. Gavitt John Mr. Gayron Mary Ms. Gebhauer Mariam Ms. Geels-Ball Stella Mrs. RN Gentry, Marsha Gentry Susanne Mrs. Ghitan Susan Ms. Ghouleh Heba Mrs. L. Giambalvo-Skaggs Barbara Ms. J. Giammona Rena Mrs. R. Gibbons James Mr. Gilbertson Katye Miss Gilchrist Galen Ms. Inc. Sciences, Gilead Gilliam Rhonda Ms. Ginoto Indriani Ms. T. Glauser Dorothy Ms. Wiener Glick & Barbara Jack W. Glissmeyer Eric Mr. R. Glover Mary Ms. Glowinkowski Diana Mrs. Gobin Ruth Ms. Godfrey Dillard Mrs. and Mr. Goessling Joan Ms. E. Goldberg Gail Ms. Goldman Lael Judith Mrs. P. Goldsworthy Timothy Mr. Gonzalez Martha Mrs. Good Stacy Mrs. B. Goodman Reece Mr. Gosling Julie Ms. M. Gould Susan Mrs. M. Goulet Josephine Mrs. Grady David Mr. Grady Kathleen Ms. Granai Roberta Ms. Gray Jerry Mr. Gray Sheila Ms. Health Home Lakes Great Griffith Tommy Mr. Groebner John Mrs. and Mr. L. Gross Arthur Mrs. and Mr. Gross Elaine Ms. P. Grundy Richard Mr. F. Guajardo Debra Ms. E. Gugins Charles Mrs. and Mr. Guignard Lane Anne Mrs. Guilin Rhonda Ms. Guillbeau Candace Ms. Gull Eileen Mrs. Gulliford Roy Pastor Gunderman Tiffany Miss Gurganus Amber Mrs. M. Gussow Donna Mrs. S. Gusz Susan Ms. E. Hafterson Carolyn Mrs. Hagedorn Thelma Ms. Haines Paul Mr. A. Hall Priscilla Ms. Hall Sarah Mrs. J. Hall Frank Mrs. and Mr. E. Halpin Mary Ms. Halstead Rhonda Mrs. Halstead Philip Mrs. and Mr. S. Hamilton Janice Ms. Hamilton Thomas Mr. Hamm Ronald Mrs. and Mr. E. Hammond Ronald Mr. Hanafee Gwendolyn Ms. L. Handzus Andrea Ms. Harden Scarlett Ms. Hark Amy Mrs. Harkins Jake and Melissa James, A. Harrigal Suzette Ms. E. Harrigan Mary Ms. Harrington Mark Mrs. and Mr. A. Harrington John Mrs. and Mr. S. Harris Rachel Ms. Harris Susan Mrs. M. Hartmann Ruth Ms. A. Harwood Elizabeth Ms. Haskin Dale Mrs. and Mr. Haskins Diane Ms. Hassler Brigitte Ms. MD Hassoun, Paul Hatfield Taylor Ms. L. Haught Evelyn Mrs. Haugland Marie Susan Ms. Hayes Boyer Gail and Hayes Denis Ms. Ursula H. H. Furlong Ursula Ms. Futrell Harvey Mr. Gage Jane Ms. Gale Dianne and Alfred Gambino Dana Mrs. T. Gamer Barbara Judge SUMMER 2010 PATHLIGHT vonne Dolloff vonne Y Mr. and Mrs. David DiNapoli David Mrs. and Mr. Distaffen J. Etta Ms. Distefano Angela Mrs. Doak James Mrs. and Mr. RN Doering, Peggy Ms. Doetzel David Mr. Doherty Dolores Mrs. RSW Dolan, Emily Ms. Dolan Ruth Mrs. Mrs. Dombrowski L. Betty Mrs. Donahoe Nan Ms. W. Downey Timothy Mr. Dragich Veronica Ms. Driscoll Jean Ms. W. Duffy Stephen Mrs. and Mr. Duffy Sharon Mrs. K. Dugan Lisa Ms. K. Duggan Sheila Mrs. E. Dunn Jack Mr. RN L. Dunn, Nora Dunn Pamela Ms. Dunne Sue Brenda Ms. M. Duque Marilyn Ms. M. Duque Gabriel Mrs. RN A. Durst, Louise Earley Sylvia Miss Ebel Deborah Ms. Ebersole Janet Mrs. Ebert Laura Mrs. Eddie Christina Mrs. Edleston Melanie Ms. Edmunds Nancy Ms. Ehemann Frederick Mrs. and Mr. MD A. Ehringer, Kari Eichelberger Jamie Mrs. K. Elchik Helen Ms. M. Eldam Saleh Mrs. and Mr. R. Elkin Claire Ms. Elkin-Andrews Denise Ms. Ellington Dan Mrs. and Mr. Elliott Eireen Mrs. Engel Brooke Ms. Enslin Beth Mary and Singer Tony M. Epple Tonia Mrs. Epstein Sue and Camm Erwin Carter Mr. Esasky Robert Mrs. and Mr. A. Ethridge Patricia Mrs. Evans Dan Mr. J. Evans Patrick Mrs. and Mr. S. Evans Myrna Ms. G. Evans Sandra Ms. Inc. Scripts, Express MD A. Fagan, Karen E. Falgoust Sylveste Mr. Farebrother Graham Mr. Farmer Kimberly Mrs. A. Farrar Carol Ms. MD W. Faulkner, James Fausz Joan Ms. A. Fecteau Dorothy Mrs. A. Federici Ronald Mr. Feldkamp Lindsay and James Feldman Helen Ms. A. Felkel Mary Ms. F. Fennell Robert Mrs. and Mr. M. Ferderer Douglas Mr. L. Ferebee Edye Ms. Fernandez Jack Mr. J. Fini Christine Ms. Fink Erin Mrs. P. Fioramonti Alice Ms. Inc. Tenpin, Boston First A. Fischer Jennifer Ms. Fish Lois Mrs. D. Fitzpatrick Katie Ms. Fletcher Joan and Arthur Foley Noel Mrs. and Mr. MD Foo, Ferngyang Foreman Pamela Ms. MSW C. Forrest, Kathy Forstner Rebecca Ms. Fortune Lawrence Mr. L. Foster Brigid Ms. E. Fox Sharyn Ms. Fragale Karen Ms. MD Franco, Veronica R. Francois Judith Mrs. Frantz Donald Mr. RRT RN, MSN, M. Frederick, Janice A. Freed Laurel Mrs. Freet Tom Mrs. and Mr. Knight Sandra and S. French Linda Frey Audra Ms. D. Freytag Karen Ms. Jr. W. Fricks, George Mr. Friedman Esther Ms. RN Friedrichsen, Donna Frix Kathryn Mrs. R. Fruge Shane Mrs. and Mr. MD Fukushima, Hiroyuki Fuller Jim Mrs. and Mr. Trust Fullerton . . Dempsey Y
Ms. Migdalia Denis Migdalia Ms. Dennis Stavropoulos Mr. Deschamps Ann Mrs. E. DeSerres Marcia Ms. Devey Michelle Ms. J. Devilbiss Barbara Mrs. Diaz Charly Mr. Dick Paula Ms. Dickler Christine Ms. Dickson Thomas and Patricia Mrs. Jessica Castro-Parkman Jessica Mrs. Catlett Judith Ms. A. Celio Jeanie Mrs. W. Cellura Susan Mrs. Chambers V. Janet Ms. Champine A. Kimberly Ms. S. Chapman Harriet Ms. J. Charles Betty Ms. Chekuri Sarala Mrs. Chembars Frank Mr. MD Chen, Hubert Cherry Ordie Ms. III E. Chester, John Mrs. and Mr. V. Chittick James Mr. Cholewa Colette Ms. Christensen Paulette Ms. Chrysler David Mr. E. Church Randall Mr. M. Ciupak Susan Ms. R. Clark Marilyn Ms. Clark Zacharian Mr. Clarke Marianne Ms. H. Clasen James Mrs. and Mr. Clements Marilyn Ms. Clemons Anita Ms. Clerkin Deirdre Miss L. Clifford Mary Ms. J. Clift Robert Mr. K. Clulee Carol Mrs. RN Cohen, V. Sue L. Cole Daniel Mr. J. Cole Rosemary Mrs. Realty Commercial Cole Coletta Lauren Ms. Colihan Chris Mr. R. Collins Lindsay Miss Collins Sue Martha Mrs. A. Colsher Barbara Ms. MD Colvin-Adams, Monica of Minnesota Shares Community A. Conant Roberta Mrs. Connor Colleen Mrs. Cook Ian Mr. A. Cook Marlene Mrs. Coon Deborah Ms. Coons James Dr. P. Cooper Jane Ms. MD C. Cornwell, Anne Inc. Systems, Medical Corporate D. Corsnitz James Mrs. and Mr. Corson Kimberly Mrs. Costa Elizabeth Ms. Costello Daniel Mr. Cote Lauren Mrs. Cotter Ernestine Mrs. Courtney Craig Mr. Couturier Isabelle Miss Covarrubias Maria Ms. Cox Bart Cox David Mrs. and Mr. F. Cox Richard Mr. Craig Raymond Mr. J. Craig Shirley Mrs. Crall Russ Mr. Cremin Anne Mary Ms. Cronin James Mr. Crow Karen Mrs. Cunningham Janice Ms. CuraScript T. Curry Ora Mrs. Curtiss Ronald Mr. Czysz Paul Mr. B. Dahlen Mary Mrs. Dalen Carrie Ms. Dallas Tina Mrs. Daniel Jim Mrs. and Mr. Daniels Elaine Mrs. Daniels Margaret Ms. DrPH D’Anna, Hoyt Laura B. Daugherty Patricia Ms. Davenport-Firth David Mr. Davila Claire Mrs. Davis Kim Ms. Davis Lee Nancy Mrs. Dawson-Crain Debby Mrs. M. De Oliviera JoAnne Ms. Deal Marcia Mrs. J. Deeb Philip Mr. S. Delaney-Davis Jennifer Mrs. Dellaria Donna Ms. R. Delp Charles Mr. Demasi Patricia Mrs. Demko Sondra Ms. Alice Ms.
PATHLIGHT SUMMER 2010 www.PHAssociation.org
52 GENERAL DONATIONS
DannyandAgnes Li Ms.K.Anne Lewis Mrs.Alice L.Lewis Ms.Carol A.Levy Mrs.AnnLevine Mr.McClellan Lester Ms.Carole L.Leone Ms.Lucy Leonard Ms.Cynthia W.Leonard Mr.Matt Lennox Mr.andMrs. Trenton Lennard Ms.Natalie M.Lengyel Mr.Charles Lemmon Mr.andMrs. LeRoy K.Johnson Mr.andMrs. Michael Lehosky Ms.Margaret Lehmann BillandIrene Lehman Ms.Susan J.Lee Ms.Deborah Lee Mr.andMrs. Norman Leder Mr.Norman A.LeBlanc Ms.Mary Lazauskas Ms.Patricia Lawson Mr.Jack Lawler LawOffice OfMichael C.Beller Ms.Beth Anne Laubach Ms.Melissa Lasher Mrs.Julie C.Larue Mr.Robert Larkin Mrs.Ellen Lanham Mr.Calvin C.Landry Mr.Steven Lamand Ms. Linh Diep Mr.andMrs. Linus Lalor Ms.Sarah C.Laidler Mr.Dennis C.Ladrigan Mrs.Mitzi A.LaBarge Ms.Gayle M.Kuoni Ms.Frances J.Kumrow Mr.Hank Kulesza Mr.andMrs. Ronald J.Kuhnen Ms.Sara Kuhn Ms.Susan Kuberra Mrs.Dina W.Kruger Ms.Jyotsna Krishnamoorthi Mr.Charles Krenzien Ms.Jennifer Krenn Mrs.Cynthia K.Kramer Mr.andMrs. Wayne Kowalski Mr.andMrs. Martin P.Korzeniowski Mr.Michael Korublo Mrs.Jennifer J.Kopinetz Ms.Karen C.Kopf Mr.Eric R.Koontz Ms.Madeline Koo Ms.Jessie Kohler Ms.Roxanne L.Koerber Mr.Peter Koenig andMs. Mary J. Mr.Daniel J.Kobel Ms.Nancy Kniffin-Jennings Ms.Muriel Kniffin Ms.SueKmetz Ms.Sandra J.Klein Ms.Martha L.Klawiter Mrs.Joyce A.Kiser Ms.Nina Kirby PeterandJeanne Kinnear Mr.andMrs. Lyle Kingshott Mrs.Mary Beth King Ms.Marie S.King Ms.Katrina King Mrs.Kate W.King Ms.Christina L.King Mrs.Vanessa K.Kimball Dr.Sharon C.Kiely Mr.andMrs. Arthur Ketchum Ms.S.Kerwit Mr.Edward Kersman Mrs.Anne E.Kenny Ms.Susan Kennedy Mrs.Brenda Kendrick Ms.Rachel L.Kendall Mrs.Jessica L.Kendall Mr.Jason Kendall Ms.Sunny Kelly Mr.Paul V.Kelly Ms.Mona Kelly Mr.James Kelly Ms.Joan N.Kelleher Ms.Norma J.Keiper Ms.Sharon Keefauver Mrs.Maria G.Kebr Mr.James Keating Mrs.PamKavanagh Ms.Andrea M.Katsenes Ms.Dorothy P.Kassilke Ms.Stavroula Karmaniolov Mr.andMrs. Zahi M.Kakish Ms.Christina Kaip Ms.Janie C.Justice Mrs.Sherri A.Jusinski Mr.Michael T.Joyner Mrs.Ruth Jordan Ms.Patricia L.Jordan Koenig www.PHA ssociation.org Ms. Ms.Sally T.Li MichaelBaker Jr., Inc. Mr.David L.Merritt Ms.Kari Merkow Mrs.Kelly Mercurio Ms.Tammy Mennig MemorialHermann Hospital System Mr.Ramon Melendez Ms.Evelyn Melendez Mrs.Garine Melconian Mr.Alex Melconian Mrs.Joann M.Meeds MedcoHealth Solutions, Inc. Ms.Julie Mease Ms.Denise Means Mr.Chris McPherson Mrs.Teresa McMillian Ms.Victoria V.McMahon Mr.andMrs. Michael K.McLellan Mrs.Cheryl McKnight Ms.Pamela R.McKay Mr.Kenny McIntire Mrs.Therese A.McGraw MichaelandBonnie McGoon Mrs.Caroline T.McGlaun Mr.Raymond McGeever Mr.Merlin L.McGee Mrs.Barbara Gaffney Mcgarvey Mrs.Rena L.McDonald Ms.Nancy L.McDonald Mrs.Sharon McDaniel Mrs.Paula M.McCreary Mrs.Christine McCormick Mrs.Barbara McCormick Mr.R.Perry McConnell, PC Ms.Judy Mcclintock Ms.Tobi L.McCauley Ms.Janet I.McCann Ms.Brenda T.McCallum Mrs.Kirsten L.McCallion Mr.andMrs. Gerald McCall Ms.Jennifer McBurney Rev.Karl A.McBride MayoFoundation forMedical Mrs.Mary A.Mayer Mrs.Toni Mayben Mr.Roger Maxwell Dr.Julie Maurey Ms.Jeanette Matlock Mr.Bruce Mathews Ms.Mary Matchett Ms.Adrienne E.O.Mason Mr.andMrs. Robert Marvel Ms.Maria Martuccio Ms.Lucia Martuccio Ms.Joette Martuccio Mrs.Alexis Martuccio Mr.Gary Martinez Mrs.Susie Martin Ms.Judith K.Martin Ms.Nina A.Marino Mrs.Cynthia L.Marble Mr.Steven N.Marais Mrs.Tina Manley Ms.Patti Mangan Mr.andMrs. Moses Manerson Ms.Suruchi Mandal Mr.Perry Mamigonian Y Mr.Marlin Maifeld Ms.Dorothy Mahoney EmmaandJuan Maes Ms.Gwen Maeda Mrs.Sally Maddox Ms.Stephanie J.MacLearn Mrs.Erin Macicek M.B.Edna& Zale Foundation Mrs.Shirley Lynch Ms.Karington D.Lyle Ms.Debra K.Luteyn Mrs.Julie Lunke LungR Mrs.Hazel J.Lundin Mr.andMrs. John M.Lueck Mrs.Carmen G.Lozada-Bruno LowerDauphin School District Mrs.Mary Loutzenhiser Ms.Leah P.Lopez CarlosJ.Longoria Esq. Ms.Joan Longbrake Mrs.Cheryl A.Long Mr.andMrs. Peter Lodewick LJFAssociates, Inc. Ms.Elaine Lisston Ms.Susie Lipscomb Mrs.Diane Lippman TheodoreG.Liou, MD Ms.Peggy Lindvig Mr.Jason Lindvall Ms.Signe Lindquist Mrs.Karen Lindemann Ehret Mr.Glen A.Lightner vetteMallory RN,MSN EducationandResearch X iufengLi X OneSource Residential Services, Inc. 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PATHLIGHT SUMMER 2010 www.PHAssociation.org
PHa’s legacy of hope society To honor those who have included PHA in their estate plans A r e W e M i s s i n g Y o u ? or whose legacies have been realized, PHA created the Legacy of Hope Society. Please update my mailing list information as follows: PHA is pleased to recognize the following members. (Please print.)
q Mr. q Mrs. q Ms q Dr. q Miss Sandra Alt Awood Joseph W. Mihuc* Name: ______Dauna Leigh Bauer* Karen Moody Business (if any): ______Sylvia Marie Becherer* Marjorie D. Mott* Gloria G. Blodgett* Joyce L. Mowrer* Address: ______Dorothy E. Bradley Dorothy and Harry Olson City: ______Roberta F. Browning* and Rita and Guy Orth State: ______Zip: ______Lee Broadbent Pat and Jerry Paton q Please check here if this is an address change. Rita and Bruce Brundage Carol Posner and Marc Priore Phone: ______Jane P. and Harold P. Cooper Frances A. Price Fax: ______James F. Corbett* Louise and Gene Salvucci Email: ______Charles W. DeVier, III* Judy and Ed Simpson I am a: Linda M. Feibel* Marcia and Jack Stibbs
Barbara Gamer Helena Strauch* q Patient q Caregiver q Parent of a child with PH Tammy* and Dean Hazen Frank A. Tobac* q Medical professional (title and affiliation): Mary and Carl Hicks Torres-Gonzalez Family ______Jacquelyn Holt Deborah and Roger Towle Richard L. Horrocks Carol B. Ungar Mail or fax completed form to: Terri L. Kopp* Daniel R. Walsh* Pulmonary Hypertension Association Gloria Lang* Andrea and Stephen White 801 Roeder Road, Ste. 1000 Thomas and Mary Jo Linnen Silver Spring, MD 20910 Sally Maddox Fax: 301-565-3994 Bonnie and Michael McGoon *deceased members
For more information on PHA’s legacy planning program, You may also submit a change of address online at call Jillian at 301-565-3004 x767, email Giving@ www.PHAssociation.org/ContactUs PHAssociation.org or visit www.PHAssociation.org/Give.
PH A S t a f f Rino Aldrighetti Adrienne Dern Arsène Koissy Jenna Roe President Senior Vice President Senior Database Associate Special Events Associate [email protected] [email protected] [email protected] [email protected] Margaret Beardsworth Christine Dickler Katie Kroner Patty Scuderi Insurance Program Manager Associate Director of International Director of Advocacy and Awareness Director of Finance [email protected] Services [email protected] [email protected] [email protected] Emma Bonanomi Patti Lalley Alicia Sovart Patient Outreach and Services Christa Donald Special Projects Assistant Public Relations & Communications Manager Associate Director of Medical [email protected] Associate [email protected] Services [email protected] [email protected] Doreen Lucadamo Dorothy Bradley Director of Meetings & Conference Meghan Tammaro Office Assistant Suzanne Flood Planning Executive Programs Coordinator Marketing and Communications [email protected] [email protected] David Burke, MD Associate Vice President, Medical and [email protected] Megan Mallory Keisha Thomas Patient Education Publications Manager, Pathlight Editor Database Manager [email protected] Kathryn Frix [email protected] [email protected] Online Community Liaison Amanda Butts [email protected] Jillian McCabe Carol Vreim, PhD Associate Director, Office of Associate Director of Development Medical Services Program Advisor the President Diane Greenhalgh [email protected] [email protected] [email protected] Director of Web Services [email protected] Jessica McKearin Rachel Wheat Debbie Castro Special Events Manager Medical Membership Program Director of Volunteer Services April Grimsley [email protected] Associate [email protected] Administrative Assistant [email protected] [email protected] Nick Petropoulos Jennifer Carman Volunteer Services Program Associate Elisabeth Williams Conference Scholarship Carsten Hailey [email protected] Grassroots Campaigns Associate Coordinator Meetings Planning Associate [email protected] [email protected] [email protected] Anastasia Raftopoulos Kerry Bardorf Family Support Program Priscilla Davis Patty Hunt Associate Medical Services Program Finance and HR Associate [email protected] Associate [email protected] [email protected] Jessica Ritter Jennifer Kaminski Office Operations and IT Manager Development Associate [email protected] [email protected]
54 www.PHAssociation.org PATHLIGHT SUMMER 2010 PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 C o n t a c t P H A Phone 301-565-3004 FAX 301-565-3994 E-mail [email protected] Member Services and Address Changes P a t h l i g h t and Persistent V o i c e s Jennifer Kaminski x756, [email protected] New Member Packets, Pins, Brochures and Cards x0, [email protected] Support Groups S u b m i s s i o n s Debbie Castro x755, [email protected] ------PH A R esources and S e r v i c e s The Fall Issue deadline is August 2, 2010. PH Helpline (daytime, please) 1-800-748-7274 Pathlight is your publication. Tell us about your support Children with PH/PPH Laurie Jeter, [email protected] 952-380-4999 group, recent event, phenomenal PHer or anything else you’d like Organ Donor Awareness to share. Let us know how you cope with PH, how you live and work Sharren Yamron, [email protected] 412-829-0069 Organization Liaisons every day. We’ll accept articles, quotes, photos, tributes, etc. for National Institutes of Health: consideration in the newsletter. We also accept submissions of Heart, Lung, and Blood Institute Judy Simpson, R.N., Ed.S., [email protected] 479-253-0082 personal PH stories, pictures, poems and quotes for publication in American Thoracic Society: Public Advisory Roundtable the next issue of Persistent Voices. If you’re not comfortable writing Rino Aldrighetti, [email protected] 301-565-3004 your story — or if you just can’t find the time — contact us and we’ll Helpline Coordinator Pat Paton, [email protected] 772-597-4962 interview you about it and write it for you. If you are interested in reporting for Pathlight or conducting interviews with other members I n s u r a n c e R e s o u r c e s of the community, let us know. Please contact us with your input and Accredo’s Hotline for Flolan 1-866-FIGHT PH for Remodulin 1-888-485-8350 x1260 stories! Send submissions, with your phone number, to: for Tracleer 1-866-228-3546 for Ventavis 1-877-4VENTAVIS “Newsletter Submission” or “Newsletter Submission” Caring Voice Coalition 1-888-267-1440 Print Services Department [email protected] Curascript Helpline 1-866-4PH-TEAM Pulmonary Hypertension Association CVS Caremark Helpline 1-877-242-2738 (Remodulin, Tracleer and Flolan) 801 Roeder Road, Ste. 1000 GlaxoSmithKline Patient Assistant Programs www.gskforyou.com Silver Spring, MD 20910 Letairis 1-866-664-LEAP NeedyMeds www.needymeds.org Work submitted will be printed as space permits. Please let us know if Partnership for Prescription Assistance 1-888-477-2669 www.pparx.com you would like anything returned. PHA cannot be held responsible for Priority Healthcare Remodulin Hotline 1-877-462-6225 any materials lost. Tracleer Access Program 1-866-228-3546
B o a r d o f T r u s t e e s S c i e n t i f i c L e a d e r s h i p C o u n c i l P a t h l i g h t & Persistent V o i c e s
Carl Hicks, Chair Vallerie V. McLaughlin, MD, Chair Megan Mallory, Editor Laura D’Anna, DrPH, Chair-Elect John H. Newman, MD, Vice Chair Michael D. McGoon, MD, Medical Co-Editor Linda Carr, Secretary David B. Badesch, MD Todd Bull, MD Karen A. Fagan, MD, Medical Co-Editor Roger Towle, Treasurer Charles Burger, MD Richard Channick, MD Camille Frede, Youth PHenomenal Youth Editor Michael D. McGoon, MD, Immediate Past Chair C. Gregory Elliott, MD Serpil Erzurum, MD Nancy Frede, Parent PHenomenal Youth Editor Karen A. Fagan, MD Robert Frantz, MD Sylvia Earley, Volunteer Copyeditor Trustees-at-Large John Granton, MD Nicholas S. Hill, MD Jodi Palmer, Volunteer Copyeditor David B. Badesch, MD, SLC Representative Marius Hoeper, MD Dunbar Ivy, MD Louise Durst, RN, PH Resource Network Representative Zhi-Cheng Jing, MD Anne M. Keogh, MD C. Gregory Elliott, MD James E. Loyd, MD Michael Mathier, MD John Hess Michael D. McGoon, MD Ronald Oudiz, MD Mark Jeter Andy Peacock, MD Ivan J. Robbins, MD Tony Lahnston Erika Berman Rosenzweig, MD Julio Sandoval, MD P a t H l i g H T r o u n d t a b l e Sally Maddox Richard Silver, MD Darren Taichman, MD Vallerie V. McLaughlin, MD, SLC Representative Victor F. Tapson, MD Jason Yuan, MD PHA thanks the Pathlight Roundtable volunteers for their John H. Newman, MD guidance and contributions to this issue of Pathlight. Rita Orth, RN Liaisons Cindy Pickles, RN Arlene Schiro, NP, Chair, PH Resource Network Shirley Craig, General Review Harry R. Rozakis Harry Rozakis, Patient Liaison Robert Tash, Volunteer Services Arlene Schiro, NP, PH Resource Network Representative Raye Bohn, Advocacy and Awareness Jack Stibbs Emeritus Jessica Lazar, PA, Medical Services Steve Van Wormer Bruce H. Brundage, MD Rev. Stephen White, PhD Alfred P. Fishman, MD Betty Lou Wojciechowski Distinguished Advisor Emeritus Robin J. Barst, MD Dorothy Olson Harry Olson Gerald Paton Patricia Paton Edwin Simpson Judith Simpson, RN, EDS
Ex Officio Rino Aldrighetti PATHLIGHT SUMMER 2010 PH Helpline: 1-800-748-7274 55 356 York, PA 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910
Web www.PHAssociation.org www.PHAOnlineUniv.org
E-mail [email protected]
Phone 301-565-3004
PH Helpline 1-800-748-7274 (daytime please)
P a t h l i g h t
We’ve Moved! PHA is now located in Suite 1000 of the same building. 801 Roeder Road, Ste. 1000, Silver Spring, MD 20910
Want to know what’s on the mind of PHA President Rino Aldrighetti? Read his blog at Don’t want to wait three months www.PHAssociation.org/rinoblog for more news from PHA? Sign up for the newly PHA Has Done a Lot . . . Because of You! redesigned PHANews (see p. 37) and receive news from the PH community every other week in your Inbox!