385 Kings Highway North Cherry Hill, NJ 08034 For more information call the SFDV office at 866-675-5545 or email [email protected] thePURSUIT Every Step Counts Stepping Out to Cure SCLERODERMA EDUCATE • ADVOCATE • CURE WALKs NEWSLETTER OF THE SCLERODERMA FOUNDATION DELAWARE VALLEY CHAPTER Summer 2015 Inside This Issue . SUPPORTwith Love November 15, 2014: a perfectly joyous day, as we watched our pre- Then we discovered the Stepping Out to Cure Scleroderma Walk Springing Into Action cious 26-year-old daughter marry a caring, funny, wonderful man. planned for May 2nd in Ventnor City, NJ. We recalled walking for Saturday, August 8th January 28, 2015: an imperfectly scary day as I heard the physician our friend 15 years ago in Philadelphia and knew this was an impor- Race4Linda...... p. 2 declare that this same precious daughter has limited systemic scle- tant chance to spread the word about this rare disease to our family John Rudy Park rosis. The word scleroderma held particular meaning for us, as we and friends and to convey the need for emotional and educational 400 Mundis Race Road, York, PA Cruise for a Cure...... p. 2 had all watched a dear friend fight an aggressive form of the disease support for those who are impacted, as well as funds for continuing around 15 years ago. But we also knew that it took her many, many research in the hopes of changing the future. Our daughter created Registration 9:30am | Walk Starts 10:30am years to receive the diagnosis, which didn’t happen until she already a team, and that was the moment that initiated our family’s finding Women’s Club Fitness Center had major irreversible organ involvement. So as frightening as the a level of support we never even could have imagined. We shared & Day Spa...... p. 2 Sunday, October 4th word was to us, we were also relieved that our daughter’s diagnosis the walk announcement on our Facebook pages, and our “friends” had come quite early in the disease progression, with the opportu- took it from there, not only jumping in to participate personally, but Lloyd Hall Days of Learning nity to monitor her carefully. We choose to view this condition not spreading the information further to their own friends, families and #1 Boathouse Row Educational Seminar...... p. 3 as an ending, but rather as a chronic illness with which she will live colleagues. As we tracked the progress of the team formed on our Registration 8:15am | Walk Starts 9:15am a full life, while also compensating for the manifestations that have daughter’s behalf, we were overwhelmed by the response, watching Dental Implants already impacted her life and those she will face in the future. This the number of walkers and the dollars raised increase exponentially. Living with Scleroderma...... p. 4 & 5 is a bewildering disease with a frustrating panoply of symptoms, I can specifically recall the tears in my eyes as I saw a donation from which vary greatly from person to person, so reliable information an old friend who had moved away from the area 20 years ago and and human support are crucial factors for moving forward in a posi- to whom I haven’t spoken in at least 10. Yet clearly as soon as she Meet Junior Board Members...... p. 6 tive and optimistic way. saw that our daughter was fighting scleroderma, she immediately went online to donate to her team. And then there were the donor Attitude of Gratitude And thus enters the Scleroderma Foundation of the Delaware Valley. names that none of us even knew, people opening up their Helpful Tips from Patients As a retired lawyer, I have transferred my hearts and purses to help a friend of a friend, regard- UPCOMING Living with Scleroderma...... p. 6 prior skills of research- less of the fact that they had never met her or us ing through legal journals personally. and online case law to now EventsEvents Bequest to SFDV...... p. 6 searching anything and ev- May 2nd dawned as a bright, clear Stepping Out to Cure Scleroderma Walk erything on Google. Research day. Our daughter and her husband August 8 Where to Find is also a significant part of drove with my husband and me down York, PA Support Meetings...... p. 7 our daughter’s occupation to Ventnor, arriving by around 9:15. and doctorate-level academ- Within minutes our team walkers be- Teri’s Run &Twilight Walk Email Support Group...... p. 7 ics. So, within days of her gan arriving, and it felt like a fun social September 11 diagnosis, she and I took to occasion as we greeted each person Downingtown, PA our computers to find as much The Stepping Out to Cure Sceroderma walk with hugs. The gratitude grew and grew Upcoming Events...... BC as we could about the cur- Team Lankford participating in as we were surrounded by so many rent status of treatments, the future wonderful friends and family. And the real highlight occurred as we Bonnie’s Cruisers Chinese Auction prospect for cures, knowledgeable health care providers, and, most saw a nephew, his wife and two children walk up to register, having September 12 Mt. Holly, NJ importantly, where she and those of us who love her could get the driven over 3 hours from Virginia to be a part of this event. Some kind of support we knew we would need. In all of those searches, the tears of appreciation were inevitable. In addition, we met additional Scleroderma Foundation was prominent as a source of education warm and nurturing folks from the Foundation, who provided Stepping Out to Cure Scleroderma Walk and connection with others impacted by this disease. even more sources of encouragement and shoulders to lean on. The October 4 walk itself was glorious - perfect weather, perfect view of the ocean, Philadelphia, PA Our first direct exposure to this organization was when she and I perfect conversation with our team members, even perfect canine attended a local educational session. In that one session we quickly walkers who provided us with snuggles and cuteness. Overall, Educational Seminar at Rutgers University found tangible support and caring among so many people we had everything about the walk - from the creation of a team to viewing October 25 never met before, not to mention presentations that were informa- the members and donations multiply to walking in the sun with so New Brunswick, NJ SFDV tive and forward-thinking. A month after that program, she and I many loving people - was a memorable event for all of us, especially attended another education session, this time accompanied by her heartwarming for my husband and me as parents seeing and feeling Giving Tuesday 385 Kings Highway North, new husband and my old one. Again, we met even more people such a substantial expression of love for our daughter. December 1 Cherry Hill, NJ 08034 who wrapped all of us in warmth and empathy, from the exemplary Check our website at SFDV staff to the scleroderma patients to the families and friends We all look for reasons why things like this disease happen to good For more information call the SFDV office at who are living through this journey with them. Again, we had the people, and perhaps one of those is so that we can get the opportu- for news and information. opportunity to glean a great deal of knowledge from the university nity to see the best side of humanity, the generosity and caring, the www.SFDV.org 866-675-5545 treatment team who presented. Along with the in-person interac- kindness and compassion, the ability to reach out even to strangers Check out our Facebook page for frequent postings at www.facebook.com/SFDelVal or email [email protected] tions, our daughter and I participate in relevant forums online, who need support. An unforgettable and uplifting experience for a and follow us on Twitter including the Foundation-sponsored Inspire group, which are also family traveling this new and unknown road with a loved one. great sources of commonality. Written by Diane Lucente Raised $8,500 Dr. Patrick M. Dr. Nora Dr. Lisa Dr. Chris T. Cronin, DO Sandorfi, MD Pappas-Taffer, Derk, MD Springing into action MD Dr. Peter A. Cruise for A Cure Merkel, MD On Sunday, April 26, one of SFDV’s prized Support Group Leaders, Angie Crowl, pictured below peering into the window of a classic Ford, and her husband Alvin Crowl held their 3rd Annual “Cruise for A Cure” Dr. Dinaz car show. Italia, MD days of LEARNING On this beautiful, sunny day in Wilmington, Delaware, the event featured classic, antique, street rods and muscle cars. seminar The numbers are still being tallied but suffice it to say 152 cars showed Mount Laurel - March 15, 2015 Educational University of Pennsylvania- March 28, 2015 this year and along with the magnificent sponsored steering wheel A rare sunny day in March brought together two Dr. Patrick M. Cronin, DO On a Saturday in early spring, 99 people impacted trophies, have raised at least $10,260 and counting! speakers from the South Jersey region to discuss in some way by scleroderma attended a highly Specializes in nutrition therapy for scleroderma patients and Rheumatology informative program presented by several team members of the highly regarded Scleroderma Raynaud’s Phenomenon in scleroderma. Cooper Internal Medicine RACE4LINDA 5k Cooper University, Voorhees, NJ Center of the Hospital of the University of Penn- sylvania. April 25th was the start of a busy weekend for the Scleroderma Founda- The first topic was addressed by Dinaz Italia, a reg- tion of the Delaware Valley (SFDV). It began with the 2nd Annual Dinaz Italia, RD Dr. Peter Merkel is Chief of Rheumatology and istered dietitian with a master’s degree in nutrition Professor of Medicine and Epidemiology at Penn. Specializes in RACE4LINDA 5K at the Milton Hershey School in Hershey, PA, in and dietetics in practice for over 15 years, primarily Nutrition & Dietetics He’s an international expert in scleroderma and has memory of Linda Hayman, who lost her life to scleroderma in July 2009. in the inpatient setting. She reviewed the causes of published over 200 scientific articles. He has been Dr. Nora Sandorfi, MD part of nearly every major clinical trial in sclero- 157 runners enjoyed this 5K and 1-mile fun walk! With the leadership of nutritional deficiencies in scleroderma patients and emphasized establishing a balanced diet that fo- Professor of Clinical Medicine derma conducted in the United States in the past Linda’s daughter and son, Meg and Ryan, a band of family, friends and 15 years. Dr. Merkel reviewed the current clinical cuses on foods that fight inflammation and provide University of Penn volunteers, ran this event raising funds to find a cure for scleroderma. trials which are ongoing at the University, explain- energy, protein, vitamins and minerals. She offered Philadelphia, PA ing their makeup, goals and status. specific suggestions for patients with difficulty Dr. Nora Sandorfi, another rheumatologist on This year the race and its many sponsors have raised $8,500 chewing or swallowing and for those with reflux or Dr. Chris T. Derk, MD Penn’s Scleroderma Center team and a member of and we are still counting! Bravo to the Haymans, their committee, heartburn. Specializes in Rheumatology the Medical Advisory Board of the Scleroderma affiliated with multiple hospitals including and the community! Foundation Delaware Valley Chapter, enlightened Dr. Patrick Cronin, a Board certified rheuma- University of Penn & the participants on stem cell and lung transplant Raised $10,260 research and procedures, one of the most exciting tologist, presented information on Raynaud’s Penn Presbyterian Medical Center and groundbreaking areas for the future of sclero- Phenomenon, a very common issue for sclero- Philadelphia, PA derma. derma patients. Dr. Cronin practices at Cooper Dr. Lisa Pappas-Taffer, MD Dr. Lisa Pappas-Taffer is a dermatologist in practice University Hospital and is a clinical instructor for at a number of hospitals, including Penn facilities Cooper Medical School of Rowan University. Dr. Assistant Professor of Clinical Dermatology and the VA Hospital, and is an assistant professor also affiliated with multiple hospitals including Cronin discussed the differences between primary at University of Pennsylvania. She presented clear and secondary Raynaud’s, noting that systemic University of Penn & recommendations for practical modes of adapt- ing skin care to the particular challenges faced by sclerosis involves the secondary form. He reviewed Penn Presbyterian Medical Center scleroderma patients. the potential consequences of severe Raynaud’s and Philadelphia, PA Finally, Dr. Chris Derk, the Fellowship Director for provided specific recommendations for lifestyle Dr. Peter A. Merkel, MD, MPH Rheumatology at University of Pennsylvania and changes to try to forestall those consequences. Chief Division of Rheumatology author of numerous articles published in peer- Professor of reviewed journals and medical books, conducted Approximately 50 participants - patients, caregivers Epidemiology in Biostatistics & Epidemiology an open question and answer session with the par- and family members - attended the program at the ticipants, providing straightforward responses and University of Penn information in an easily understandable manner. Mount Laurel Community Center, gaining valuable Perelman Center Advanced Medicine information and insights shared by the speakers, Philadelphia, PA All four speakers were not only supremely well- as well as a wonderful lunch and refreshments. The credentialed experts in their fields, but were also energetic, clearly caring physicians who related speakers were videotaped. Presentations can be particularly well with the audience. All speakers found on our chapter website at www.SFDV.org. were videotaped, and the presentations can be Select Your Community tab, then Video Gallery, found on our chapter website at www.SFDV.org. and finally 2015 Education sessions. Additional Select Your Community tab, then Video Gallery, videos will be posted as permission is obtained. and finally 2015 Education sessions. Additional videos will be posted as permission is obtained.

2 3 Dental Implants: Livingwith Scleroderma

“I“I wish wish I I had had keptkept a journal,”journal,” thatthat she she could could no nolonger longer close close her lips.her lips. MaxillofacialMaxillofacial Surgery Surgery was on wasWendy’s on Wendy’s Wendy says of the mental changes that The ability to produce saliva was also Wendy says of the mental changes that The ability to produce saliva was also team teamand it and fell toit fellhim to to himactually to actually occurred during her treatment process. compromised, which led to periodontal remove bone from the jawline in an occurred during her treatment process. compromised, which led to periodontal remove bone from the jawline in an “There were a lot of ups and downs.” disease. In essence, her teeth were effort to enlarge the size of her mouth. “There were a lot of ups and downs.” disease. In essence, her teeth were effort to enlarge the size of her mouth. Wendy’s dental problems extend deteriorating. “I was investing a lot While Wendy’s mouth healed, Wendy’s dental problems extend deteriorating. “I was investing a lot While Wendy’s mouth healed, back to her youth. Her large teeth of money in dental care, but it wasn’t she wore temporary teeth (dentures). back to her youth. Her large teeth of money in dental care, but it wasn’t she wore temporary teeth (dentures). overwhelmed her tiny mouth, plus she helping,” she comments, estimating she Dr. Weierbach’s design plan centered “ Good dentistry should overwhelmed her tiny mouth, plus she helping,” she comments, estimating she Dr. Weierbach’s design plan centered “ Good dentistry should had an overbite. But, it wasn’t until had undergone five to seven root canals on providing Wendy with smaller teeth always be aesthetically had an overbite. But, it wasn’t until had undergone five to seven root canals on providing Wendy with smaller teeth always be aesthetically she was diagnosed with scleroderma over the years. that would be more compatible with pleasing.” she was diagnosed with scleroderma over the years. that would be more compatible with pleasing.” – which causes the connective tissues So she began doing research. A her mouth size. – which causes the connective tissues So she began doing research. A her mouth size. to break down and harden due to an friend recommended that she contact Three months post-surgery, toover-production break down and of harden collagen due – that to an Dr.friend Weierbach. recommended that she contact Wendy wasThree fitted months with implants post-surgery, (two over-productionher troubles really of began. collagen “The – thatpain is Dr. Weierbach. on theWendy lower bone,was fitted four on with the implantsupper). (two her troubles really began. “The pain is on the lower bone, four on the upper). similar to arthritis,” Wendy explains. “ My friends and family love A prosthesis snaps onto the implants. similarIn some to instances, arthritis,” the Wendy connective explains. The designA prosthesis allows her snaps to take onto the the implants. “my My new friends look. andThey family are all love Intissue some can instances, harden aroundthe connective the organs, prosthesisThe design in and outallows quite her readily. to take “It the amazedmy new by look. the Theychange.” are all tissueincluding can theharden heart. around In her thecase, organs, her allowsprosthesis her to care in for and her out teeth quite much readily. “It includinghands are the especially heart. Inaffected. her case, her amazed by the change.” easier,” allows Dr. Weierbach her to care says, for alluding her teeth much handsGrowing are especially up, there affected. were no red It just so happened that Dr. to theeasier,” arthritic-like Dr. Weierbach condition says, of alluding f lags.Growing She was up, always there physically were no redactive WeierbachIt just was so familiarhappened with that Dr. her hands.to the arthritic-like condition of f lags.and participated She was always in sports. physically During active her scleroderma.Weierbach Hiswas daughter, familiar Lindsay,with has Wendy’sher hands. dental makeover affected andsecond participated year of college, in sports. however, During the her thescleroderma. antibody for Histhe disease.daughter, “All Lindsay, of a hasthe shapeWendy’s of her face. dental Missing makeover back affected symptoms began to appear. sudden, her hands were turning colors second year of college, however, the the antibody for the disease. “All of a teeth thehad shape caused of her her face face. to sinkMissing inward back She made the rounds of doctors, and she had pain that compared to along the jawline. As a result, her face symptoms began to appear. sudden, her hands were turning colors teeth had caused her face to sink inward finally finding an ally in Dr. Sergio frostbite,” Dr. Weierbach recalls. Lindsay was long and thin. Now her face looks She made the rounds of doctors, and she had pain that compared to along the jawline. As a result, her face Jimenez, a rheumatologist at Jefferson also consulted with Dr. Jimenez and more filled out and has taken on a finally finding an ally in Dr. Sergio frostbite,” Dr. Weierbach recalls. Lindsay was long and thin. Now her face looks Hospital in Philadelphia. “Philly saved was so impressed by his passion for the rounder shape. Jimenez, a rheumatologist at Jefferson also consulted with Dr. Jimenez and more filled out and has taken on a my life,” she says. research he was conducting that she Wendy says the year-long process Hospital in Philadelphia. “Philly saved was so impressed by his passion for the rounder shape. Her attitude also plays a role in launched a foundation – Lindsay’s Hope was worth every minute. “My friends my life,” she says. research he was conducting that she Wendy says the year-long process successfully dealing with the disease. – that aids in fundraising for the work and family love my new look. They are Her attitude also plays a role in “I stay positive. I haven’t let it live beinglaunched done at a Jefferson.foundation – Lindsay’s Hopeall amazedwas worth by the every change. minute. I’m happy “My to friends successfullymy life,” says dealing the marketing-support with the disease. – thatWendy aids met in withfundraising Dr. Weierbach for the work shareand my experiencesfamily love withmy new anyone look. who They are “Iassistant stay positive. at Clipper I haven’t Magazine. let it Inlive an andbeing told donehim one at Jefferson. of her objectives was is interested.all amazed I don’t by carethe change. what people I’m happy to myeffort life,” to says continue the marketing-support exercising, Wendy to be ableWendy to eat met better. with Missing Dr. Weierbach teeth, thinkshare – I am my who experiences I am.” with anyone who assistantdiscovered at Clipperwater aerobics. Magazine. She soIn an a protrudingand told him mouth one andof her periodontal objectives was is interested. I don’t care what people effortenjoyed to continueit that she exercising, became a certified Wendy diseaseto be ablewere toroadblocks eat better. to Missingeating a teeth, think – I am who I am.” discoveredinstructor waterseven yearsaerobics. ago and She now so propera protruding diet. “And, mouth the scleroderma and periodontal enjoyedteaches it a thatstrength-training she became aclass certified along didn’tdisease help were matters,” roadblocks Dr. Weierbach to eating a instructorwith arthritis seven aquatics years agoat the and Lancaster now pointsproper out. diet. “And, the scleroderma teachesFamily aYMCA’s strength-training Lampeter-Strasburg class along didn’tThe gamehelp matters,”plan included Dr. Weierbach removing withlocation. arthritis She aquaticsalso continues at the to Lancaster ride her whatpoints remained out. of Wendy’s teeth (many beloved (modified) Harley-Davidson were so decayed that they were beyond Family YMCA’s Lampeter-Strasburg The game plan included removing Article courtesy of location.motorcycle. She also continues to ride her saving).what remained“She would of eventually Wendy’s haveteeth lost (many Lancaster County Magazine Scleroderma was impacting and used with permission. beloved (modified) Harley-Davidson themwere all,” so Dr.decayed Weierbach that notes.they were From beyond Wendy’s oral health. The skin around there, an oral surgeon would take over. motorcycle. saving). “She would eventually have lost her mouth had tightened to the point Dr. Andrew Heise of Conestoga Oral & Scleroderma was impacting them all,” Dr. Weierbach notes. From Wendy’s oral health. The skin around there, an oral surgeon would take over. her mouth had tightened to the point Dr. Andrew Heise of Conestoga Oral & 34 LANCASTER COUNTY | MARCH 2014 4 5

34 LANCASTER COUNTY | MARCH 2014 Meet the SUPPORT GROUP Helpful information received from scleroderma patients Meetings Junior Support groups provide a forum to share feelings, concerns and information, as well as a place to offer peer support and encouragement. that may be beneficial for new patients Solicitations or research projects are not conducted at support group meetings. Support groups often feature speakers specializing in scleroderma or related topics. • Find very good doctors whom you know will listen to you, respect To find out information about upcoming speakers or meeting topics, please contact the support group leader or chapter office. you, and are interested in making decisions with you. If you go to a new This schedule is subject to change. Before attending a group for the first time, please call to verify date and time. Groups are free of charge and open to everyone. doctor whom you feel isn’t interested or empathetic, don’t go back. Trust your instincts. You know yourself and your needs better than others do. • Have a few people who can take turns to attend doctor’s appointments DELAWARE with you and take notes. It can be challenging to remember everything Wilmington, DE (North Delaware) the doctor says. Woodlawn Library • Obtain copies of all your medical records. 2020 West 9th Street | Wilmington, DE 19805 | 302-571-7425 • Organize quickly by using manila envelopes, highlighters, and note- Every other month on Wednesdays at 6:00 pm books. Take notes and ask questions at your doctor’s office. Contact: Angie Crowl, 302-425-5054 OR email: [email protected] • Keep a journal of exactly what is happening to your body. It is im- portant to give your doctor as much information as possible and to look back to how your condition has evolved. Read literature and articles related to the disease and which specialists you should see. NEW JERSEY Brick, NJ (Monmouth-Ocean County) • Read “The Scleroderma Book” by Maureen Mayes. Cherry Hill, NJ (Burlington-Camden County) 401 Chambers Bridge Road | Brick, NJ 08723 | 732-262-1000 385 Kings Highway North | Cherry Hill, NJ 08034 | 856-779-7225 BOARD of DIRECTORS • Be careful about what you read on the internet. Once a month on Saturday at 10:00-12:00 pm 2nd Thursday of every other month at 1:30 pm • Do not stand in front of the mirror and stare at yourself or compare yourself now to old photos. This is tempting to do, but it can be very self- Next meeting Oct. 3 Cherry Professional Building Brick Town Hall, 1st floor meeting room- doors A & B The SFDV is excited to announce that it is forming a Junior Board of focused and depressing. Contact: John Keegan, 856-767-4783 Keep doing things that you love. Don’t give up. Maybe you can’t do Contact: Marlene Stoever, 908-278-8623 Directors. An informal meet and greet was held at the Cooperage Wine • email: [email protected] those things as often, but keep socializing and enjoy hobbies. Don’t hide OR email: [email protected] OR th and Whiskey Bar in Philadelphia on June 17 to share ideas and estab- away. Your true friends love you and will be blessed by helping you. lish some early guidelines for the group. The Junior Board will give our • Eliminate or try to reduce stress. PENNSYLVANIA younger leaders an independent structure to volunteer, fundraise, and • Do for others. Write a note, e-mail, or make a phone call, and en- advocate for scleroderma in the Delaware Valley, as well as share their courage someone else. Doylestown Philadelphia Plymouth Meeting expertise with the senior Board of Directors. It was decided that the first • Do the ABC’s—think of something starting with A, B, C, etc. that you Doylestown Hospital | Conference Room G Presbyterian Medical Center, University of Pennsylvania Health System Mercy Health Center can be thankful for, and give thanks! (main entrance elevators to ground floor, go right off elevator) 39th and Market Streets, Wright Saunders Building Plymouth Meeting Mall meeting will be held at the upcoming Philadelphia Walk on October 595 West State Street • Doylestown, PA 18901 Gardner Conference Room 128-C | Philadelphia, PA 19104 500 West Germantown Pike | Plymouth Meeting, PA 19462 • Mindset is everything. Stay positive. Sure there are really, really bad 215-345-2200 4, 2015. The Junior Board is open to anyone aged 21 to 39 willing to days, but not every day is terrible. Make the most of small blessings. 215-662-8000 volunteer for the SFDV and take part in a future Junior Board fundraiser Know that you have more character, patience, sympathy and compassion Last Monday of the month, quarterly at 6:30 pm 2nd Wednesday of every other month at 1:30 pm 3rd Monday of each month at 6:30 pm for others through your experience with scleroderma. (except Jan-March, December) supporting scleroderma research. Individuals new to scleroderma and September 28 (Audrey Fleck, Nutrition Counseling) Next meetings Do not give up. Keep active, pace yourself, and look for others who volunteering in the nonprofit world are welcome. If you are interested in • November 30 (Dr. Sandhya Salguti, Central Bucks Spec. Gastro) Aug. 12, Sept. 9, Oct. 14 and Nov. 11 you can encourage along the way. Contact: Desiree Bleam, 215-249-1132 Contact: Joyce Roby-Washington, 267-516-6987 Joan Evans, 215-699-2345 participating in this group, contact Fee Sepahi at FSepahi@scleroderma. • Join an online or in-person support group. You can learn a lot from OR email: [email protected] OR email: [email protected] OR email: [email protected] org or Chris Gaydos at [email protected]. people dealing with the disease. Special thanks to Betsy and Alicia for their contributions. Reading Williamsport Ardmore 1200 Broadcasting Rd., Suite 200 | Womissing, PA 19610 Hoss’s Steak House Online Support Group Arranging a bequest to Scleroderma Foundation of the Delaware Valley 570-326-0838 1954 E. Third Street | Williamsport, PA 17701 will assure legacy planning in regard to research and patient care. 3rd Tuesday of each month at 7-8 pm – 2nd Saturday of every other month at 10:00 am 570-326-0838 Google Chat online meeting Contact Fee Sepahi at SFDV by calling 856-779-7225 Next meetings 1st Wednesday of the month at 1:00 pm download app or login to gmail account to participate; or clip and return this form in an envelope to SFDV address. September 12, November 14 (except January, February, July & August) email Support Group Leader to join next meeting Sept. 2 Contact: Donna O’Sullivan, 610-513-8882 Name (please print):______Contact: Dawn Batzel, 610-310-2566 Contact: Jayne Young, 570-323-4228 OR email: [email protected] OR email: [email protected] OR email: [email protected] Address:______City, State, Zip:______SUPPORT GROUP Phone:______Email:______Email Please send me information about providing for the Foundation in my will We have started an e-mail support group for those patients and families that are not close to one of our existing support groups or those or about planned gifts, which could provide lifetime income for myself and/or others. who would like to participate in addition to attending a support group. There is a weekly topic of discussion by email I’d like to know how to include SFDV in my will. and everyone is free to comment or ask a question at any time. You can participate as little or as much as you like. SFDV is already included in my will. If you are interested in being part of an email support group, Thank you for including us in your personal planned giving. please contact the office at 856-779-7225 or via e-mail at [email protected]. 6 7