This issue of the CCA Network is dedicated in memory of Gavin Mohney

ccanewsletter of the children’s craniofacialnetwork association Cher—national spokesperson 2013: Issue 1 inside cca kid brandon williams . . . . .2 cca teen daniel pfeiffer...... 3 cca supersib ravyn williams...... 4 friends of jeremy...... 5 rick’s raffle ...... 5 choose kind ...... 6-7 Wonderful message from the chair. . 7 message ryan’s road ...... 9 donors in the spotlight. . . 9 from the pete’s oktoberfest . . . . 10 executive chocolate festival. . . . . 10 director how to raise funds. . . .11 retreat sponsors . . . . .14 scott’s story preading awareness of holiday parties ...... 16 By Bob Guzzo sindividuals affected by good news...... 17 facial differences is such an important endeavor and craniofacial acceptance t’s 1983, and we were expecting our first child . After month ...... 17 iseven years of marriage, this is “way cool .” We told something for which CCA fundraising news. . . 18-19 everyone, got the ultrasound, amassed baby supplies, has long strived . We feature got another ultrasound, bought a new house, had baby calendar of events. . . . 19 children and adults affected showers, yet another ultrasound . by craniofacial conditions state assistance...... 19 Wait, why so many ultrasounds? in our newsletters to show donor list ...... 20-23 After the first one, the doc said he’d like to be thorough . that these individuals have testimonial...... 24 After the second, he said, “Something doesn’t seem quite hobbies, skills, likes and right . You should go to Indianapolis and see a prenatal dislikes just like everyone specialist . Go . Now ”. Indy perinatologist: “Blah, blah, else . When we are really medicalese, intrauterine growth retardation, blah, blah, cyst, chromosome abnormality, triploidy, blah, outcome guarded, lucky, we get a Public in our experience, consider termination ”. Service Announcement What to do? The first decision was the easiest and best one (PSA) on television or radio we ever made: He will be born, and we’ll take it from there . or an article placed in a

see scott, page 12 see executive empowering and giving hope to individuals and families affected by facial differences director, page 15 ccakid meet brandon williams

randon Williams is a tucking him in has to kiss bhappy, adventuresome them . And then he kisses two-year-old—a “big boy” each one again before who wants to explore lights out . everything . He puts his Most of all, he loves his skills to good use in big sister, Ravyn, who will preschool, where, apart be six years old this May . from playing, laughing Last summer they went and napping, he can to their first CCA retreat, also be found creating where they had a blast . masterpieces with crayons . They even took their first- And this toddler loves to ever plane ride together — build . Not just with Legos, a big, fun adventure for the but with anything that can both of them . connect or stack: blocks, Brandon was born with bowls, cups, you name a cleft lip and palate and it . Just ask his Yamma has become an old pro (grandma) . In addition, with medical procedures . Brandon really likes He has already had one SpongeBob—he thinks he’s major surgery and will have the man—and he loves another when he’s five watching Mickey Mouse or six . He also has speech Clubhouse shows on TV . therapy every week . Still, Brandon also has seven throughout it all, Brandon stuffed buddies that live bounces right back to his in his bed: Roar the lion, curious, energetic self . Hearts the bear, two “He’s a Superman,” his “gwinos” (penguins), mom, Robyn, said . Goofy, Big Rabbit and Mater from the movie Cars . He will throw a fit if each one is not in its place . Before bed, he has to kiss all of them . Then whoever is

2 ccateen meet daniel pfeiffer Hi, my name is Dan . I am always on the go hI am 13 years old and and do not let my medical was born and raised in issues slow me down . I Philadelphia . I was born love to read . I also swim for with Saethre-Chotzen Neshaminy CORE and hope syndrome . My parents to join their USA team next found out that it runs in my year . This year, I made the family . My mom, grandma top 50 in backstroke for my and great-grandma carried age group in the Suburban the gene . I never thought Athletic League . that I looked different I play the piano in a jazz like a sister, though . She When I grow up, I am because we all looked ensemble at Settlement is always there for me . My going to be an engineer similar . Music School . And, I grandma and grandpa spoil and figure out how to build When I was younger, I am a straight-A student me, since I am the only a hover car, robotic body never really knew that I was at Pennsylvania Virtual grandchild on my mom’s parts for people without any different from anyone Charter School as well as side of the family! limbs and awesome else . My mom and dad told the president of the PAVCS My grandma and Iron Man suits . I have a me that it was a genetic National Junior Honor grandpa are somewhat mechanical mind and twist in my DNA, but I Society chapter . One of like Auggie’s grandma in want to invent . I love never thought about it or my honor society service the book Wonder . They do Leonardo Da Vinci and tried to understand . projects was a slideshow everything and anything Thomas Edison, both great Doctors, hospital visits, to help create awareness with me . They even play thinkers that were ahead and therapists were always for people with facial Halo on Xbox 360! Picture of their time! I also have part of my life . I have had differences . two 67-year-olds playing a new interest in genetics . four vault advancements . I like to play video games, Xbox 360—it’s fun! (Hmmm, I wonder why?) Last August I had a surgery but who doesn’t? My I have a cat named Blue I believe that kids with which really sparked an favorites are Banjo-Kazooie: Bee who is eight . (I got craniofacial differences are interest in becoming Nuts and Bolts, Minecraft him when I was five and unique . We go through more aware of myself . and the Halo series . I also I thought we were going a lot of challenges . It I wondered why I have take art classes at the to get another cat that I makes us who we are . I what I have . I imagine Philadelphia Museum of was going to name Pinky . am grateful to have CCA every CCA kid has asked Art . Living in Philadelphia, Mom and Dad said “Maybe in my life . I am lucky to be that question! My parents, I love to visit all kinds of someday .”) I can always able to meet kids like me . my team of doctors at museums and historical count on my mom and Not many people can relate Children’s Hospital of sites . dad no matter what the to having the same types Philadelphia, and CCA have I have a great, supportive situation, whether it be of surgery . But no matter really helped me . family . I do not have any daily life or surgeries . They what the world throws at I am a busy, fun-loving siblings, and it is good have my back! me, I will always hold my kid with many hobbies and because I have my own head high! like to make people laugh . room! My cousin Carly is 3 ccasupersib baby is a boy . You’re going Mrs . Claus a necklace . I to be a big sister .” I also think it was to get those said the doctor told me extra “brownie points” to your new brother might guarantee a spot on the have a cleft lip (a special nice list . She said it was mouth) and you have the because they make sure big sister job of being my everyone gets something helper . —even coal—and all they Months later Brandon ever get is cookies . was born . Now that Ravyn This past summer was was a big sister, her brother her first retreat, riding could do no wrong (at on a plane for the first least at the time) . When time . I thought she’d be he cried, she yelled for intimidated and shy, but help . When he fell, she from the very first day she cried with him . When a made tons of friends . She little girl said “Momma, had the time of her life and a baby monster,” Ravyn still talks about it . immediately said, “No, my Now Ravyn’s a meet ravyn williams baby boy ”. kindergartener . When she By Robyn Curtis Ravyn is now five and leaves each morning she will be six in May . The gives her brother a kiss and hen Ravyn O. get messy, you really can majority of things have not tells him to have a good wWilliams was clean up . changed . She still wants to day: “Don’t worry today . I younger she had the When Ravyn was three be a ballerina princess, and have your back .” Brandon standard little girl fears — years old, she was told own a thousand Barbies is the first person Ravyn the dark, monsters, and Mommy had a baby in with all the clothes and sees in the morning and pain . She also had dreams her tummy . You could see shoes . She now wants the last at night . of being a princess ballerina her excitement of getting to hang out with Mickey Even through all the who has a lot of horses; someone to play with night (he’s a boy) but live with fighting and bickering, being a great swimmer like and day . Of course she had Minnie and the princesses . both of them are very lucky her aunts, Natasha and all the regular questions of She tried swimming and to have each other forever . Jordan; living at Disney a three-year-old: “Was it a realized you have to put In fact, when she cries, World with Mickey, Minnie boy or girl? What is their your face in the water so, Brandon points and yells and all the princesses; and name?” that is a big NO . Projects for help . going to Chuck E . Cheese’s A couple months later and cooking are a must In Ravyn’s eyes, there has every day . Day-to-day after an ultrasound, Ravyn with Grandma (who never been a difference activities included playing asked me, “Mommy, why doesn’t mind the mess and in his looks — or anyone with toys—all toys, even are you sad? When you’re knows all messes big or else’s, for that matter . things that are not toys . sad is the baby sad too?” small can be cleaned) . And that makes me really She loved to do projects— I didn’t know that answer, When meeting Mr . and proud . although it took her quite but I could answer one of Mrs . Claus at the Chicago a while to realize when you the other questions: “The Indian Center, Ravyn made 4 friends of jeremy golf tournament 2012 rick’s raffle By Kristine Dale 2013 and a Derek Jeter photo! A very supportive local he Third Annual Rick’s car dealership, Simmons- tRaffle started February Rockwell, was not only 14 . Founders of the effort, one of the major sponsors Ann and Doug Burgin, but also provided a new established the annual car prize for a hole-in-one raffle in memory of their contest . Unfortunately beloved grandson, Rick no one won the car, but Dornier . everyone had fun trying! The prize for this year is The event was a huge a Thomas Train Table . To success, netting more than go with the deluxe set-up, $34,000 for CCA! they’ve also included a set Jeremy was again joined of four “Thomas & Friends” this year by fellow CCA kid Wooden Engines . The prize Ryan Gulich, and we had retails for more than $250 . a special surprise visit by Thomas the Tank Engine CCA friend Freddie Seitz! toys were among Rick’s It is so wonderful to have favorites, and the winning CCA friends join us for the ticket will be drawn on tournament each year . The Rick’s birthday, April 25 . golfers really enjoy meeting In accordance with the new kids and catching up wishes of the Burgins and he Eighth Annual for a 40-inch LCD TV and with kids they have met in Rick’s family, all funds tFriends of Jeremy Golf an iPad . the past . raised go toward CCA’s Tournament was held on The silent auction We are so grateful to Patient Financial Assistance Saturday, September 22 included many autographed everyone who supported program in Rick’s at the Corning Country memorabilia, including this event and the kids name, to help families Club in Corning, NY . There items from the New from CCA . defray expenses while was an incredible turnout York Giants, New York seeking medical care for and overwhelming support Rangers, Buffalo Bills craniofacial conditions . from the community, our Tickets are just $5 each, co-workers, friends and five tickets for $20, or 15 family . tickets for $50 . We are so grateful for the You may use our regular tremendous support of our online donation site to 137 golfers and more than purchase tickets if you 55 generous sponsors who indicate Rick’s Raffle . helped to make the day a Or call CCA at 214-570- success! The tournament 9099 or 800-535-3643, included a raffle, silent email Jill at jpatterson@ auction, closest-to-the-pin ccakids.com or contact her 50/50, closest-to-the-line through CCA’s Facebook prize and a skins game . messaging page . There was a special raffle 5 Peter’s Precept video has thank you for choosing kind! been viewed over 900 times on Youtube! ow wonderful way of embracing the YouTube, and I’m proud to Peter how much he has hthat the “Choose book’s message to “Choose say that my family is doing inspired us . Because of Kind” message from R.J. Kind .” Here’s the Standing our part to spread CCA’s Peter this is happening . . Palacio’s book, Wonder, Ovation for Peter video that message that “Beyond the To Our CCA Friends . I is being embraced in Reilly Posey’s 5th graders Face is a Heart,” while also believe the entire middle classrooms around the created . promoting Ms . Palacio’s school from grades 6-7 country! Teaching students As a real-life Auggie’s campaign to “Choose shared the book as a to be accepting of Mom, I can’t recall ever Kind .” But, it doesn’t end school-wide read . How differences and choosing being so touched as I was there . . amazing is that?! And, to act kindly toward others when watching this video . This morning, I was how about that video? is a powerful lesson that I have always said that our blown away to read the I’m still choked up and will stay with these kids CCA kids leave a powerful following email from overwhelmed with throughout their lives . impression on everyone . Deb Tyo who teaches at gratitude . This book Having them connect with As their parents, I believe Versailles Middle School in and these teachers are real-life people who have it is up to us to make Ohio . “Dede­­—Please tell improving the lives for CCA facial differences solidifies sure that impression is that lesson even more . overwhelmingly positive . If you have been After drying my eyes, I following our blogs about told Peter that he should Wonder, then you know send a video message that CCA began selling the back to Reilly Posey’s book just a few months class thanking them and ago . The Power of First sharing his opinion of the Impressions announced our book . What ensued was endorsement of the book . a great evening where We then participated in the my two boys wrote a skit, #WonderSchools Blog Tour, rehearsed, and eventually by posting Every Kid Needs produced Peter’s Precept a Hero . A 5th grade class Video . What a fun family in Baltimore saw the blog project . We had a lot and, after reading Wonder, of laughs together that acted on its message by night—lots of ear humor! choosing to give a real-life Peter’s Precept video Auggie his first standing has now been viewed ovation . What a wonderful over 500 times on 6 families everywhere—the affected kids, their siblings, message and their parents . CCA parents have from the faced sadness, fear, grief, board chair and anger following the birth of their child . They Winter 2013 have spent anxious hours worrying about teasing y family and I have and bullying at school . mbeen involved And, they have endured with CCA for more than many agonizing days and a decade, and I consider nights sleeping in hospitals, Wonder is available at ccakids. it a privilege to serve our I think the staff was a bit waiting in emergency org/wonder.html for $12 families . When my son speechless when I asked rooms, and driving to/from Peter was born 12 years permission to host the specialty clinics and therapy • Random House for ago, we were overwhelmed event even though we had sessions . For all this, creating the Choose Kind with not only the medical never attended a retreat or our CCA family is finally website responsibilities but also met anyone from CCA! receiving some gracious • @DavidAEtkin, the concerns about social “Pete’s Scramble for acknowledgements of teacher from Buffalo who acceptance . I kept thinking CCA” was an annual acceptance . Let’s return started #WONDERSchools that the more people we event for five years . Most the kindness by expressing • Reilly Posey (@ could get to know Peter importantly, it inspired our appreciation for those PolkaDotOwlBlog) & her the more acceptance he a new era of family who are embracing the 5th Graders in Baltimore would have growing up . fundraisers that have “Choose Kind” movement . for their Wonder Blog & Today we have an helped secure CCA’s long- Take CCA’s Choose Peter’s Standing Ovation organized effort that term viability . About 40% Kind Challenge now at • My two amazing boys promotes this idea through of our annual donations ccakidsblog.org/p/choose- Peter & Jacob for CCA’s “Beyond the Face is now come from family- . kind-challenge.html promoting the Choose a Heart” campaign used in organized events, which CCA Families created Kind campaign and September for Craniofacial is a unique reflection of the following video at producing Peter’s Precept Acceptance Month . Twelve how much the organization the “2012 Cher’s Family • Deb Tyo (@ChocolateAir) years ago, however, this is valued by its members . Retreat” as a thank you to & Versailles Middle campaign and the ability Without your help, our all of those who support School for their Wonder to connect through programs and services and embrace our vision of a Blog and CCA Standing social media outlets were would be dramatically cut . world where all people are Ovation nonexistent . Today CCA serves 10,000 accepted for who they are, • Sherry Gick (@ In 2003, my husband families across the United not how they look . I can’t LibraryFanatic), a and I began hosting an States and is recognized as imagine a more deserving school librarian from annual golf outing where the premiere craniofacial audience for it’s debut . Indiana, for her many friends, family, and support organization in Thank You from CCA! assistance in launching work colleagues came to the country . Through our Finally, my standing #WONDERSchools learn more about Peter’s growth, we have retained ovation goes out to the condition . We chose a loving family atmosphere following for their amazing Dede Dankelson CCA as the beneficiary of of support to one another . acts of kindness . . the event as I had been Cher’s Annual Family Dede is the Board Chair for • R.J. Palacio for writing receiving the newsletter Retreat is a huge part of CCA and proud Mom of Wonder and liked the stories about ensuring this closeness CCA Kid Peter (age 12) & the children and families . continues . CCA Sib Jacob (age 8) see board chair, page 8 7 board chair, from page 7 CCA’s day-to-day specific skill sets to assist Best Seller and winner of operations are managed the staff . Some of those countless literature awards The influx of social media through our office in skills include legal, finance, is making our vision that and technology, however, Dallas by three full-time public relations, marketing, “all people are accepted for enables us to stay in touch professionals . Char fundraising, education who they are, not how they with one another all year Smith has been executive and grant writing . We look” become a reality . Its long . It is also increasing director for 23 years and is currently have a board of message to “Choose Kind” CCA’s awareness beyond tremendously dedicated to eight directors comprised complements everything the craniofacial community . CCA’s families and vision . of outside professionals, CCA stands for, and its We are building recognition Annie Reeves has served parents of CCA kids and ability to make a positive throughout the country via as program director for 10 individuals affected with a social difference for our Facebook, Twitter, Pinterest, years and is our primary facial difference . children is invaluable . We Yahoo! Listservs, CCA contact for families in need Long-term director Tony want to see this book Kids Blog (ccakidsblog.org) of financial assistance, Davis rotated off the board become a part of every and other venues . One registration for the retreat, at the end of 2012 . Tony school’s curriculum . Please long-term objective is that materials for Craniofacial will remain involved with see the Wonder article all communities, medical Acceptance Month, and CCA as our primary contact in this newsletter to read facilities, and schools all other things to do with with Cher, our honorary more about our plans . nationwide recognize CCA education and outreach . spokesperson . He has Although we don’t as the primary resource and Jill Patterson has filled dedicated years of support to always like the attention support organization to the the role of development our board, including the role our kids receive, we can craniofacial community . director for 11 years . In of chairperson from 2006 to empower ourselves and The January 2013 addition to being “Robbie’s 2007 . Thank you Tony! our children to make as launch of our beautiful Mom,” Jill handles all Margaret Lavender, many positive encounters new website (ccakids. fundraising and grant our newest director, was as possible . Every contact org) is one tool we will activities, including family welcomed to the board this you make with someone leverage toward achieving fundraisers; please contact year . Margaret lives in Fort is an opportunity to bring this objective . Please join her if you wish to host Worth and has attended positive awareness to the me in recognizing Robin an event or need help some of our local CCA craniofacial community . Williamson for designing with suggestions . We also events and fundraisers . Peter’s simple approach such a beautiful site, with employ a cheerful part-time She works for Honda is, “Don’t be afraid to be much input from Taryn administrative assistant, Financial Services and has friends with someone who Skees, the CCA Staff, Jana Peace, who may be an experienced background looks different .” and the CCA marketing your first point of contact in generating revenue for All of us at CCA intend to committee . CCA is also when calling the office nonprofits . We are always make sure his words receive grateful for the $5,000 directly . looking for professionals our full support! Please grant from the Tony CCA could never achieve who possess specific skill don’t be afraid to reach Stewart Foundation that all we do with the support sets and experience to out and be a difference helped fund the project . of only three full-time serve on our board . Please maker in your own world We want the website employees . Our board contact the office if you knowing that hope and to be a dynamic and of directors is constantly have recommendations or encouragement will always resourceful tool for our at work on projects . We skills that you can volunteer be available through CCA . families, so please contact divide and conquer through to the organization . the office if you have committees that handle One of the most exciting Dede Dankelson thoughts or suggestions governance, marketing, outreach programs we CCA Board Chair regarding content . Our programs/services, finance, are focusing on this year marketing committee audit and fundraising . is promoting the book is already working on The board is comprised of Wonder by R .J . Palacio . expanding the site beyond individuals who contribute This #1 New York Times® this initial launch . 8 ryan’s road for cca 9-Pin, No-Tap Bowling Tournament by Ryan L. Gulich, Sr.

this year! Crystal Bowling Lanes, Dandy Mini Mart, Home Depot, Reality USA and Swan & Sons- Morss Company Inc were also top sponsors . Thanks to everyone’s generosity, we netted $5,548 . This is our family’s donors in the spotlight fourth fundraiser for CCA, and we have been .B. (James “Bow”) and with Reed’s five siblings fortunate enough to have jCynthia Wills have (Jim, Cindy, Ted, Tom and raised more than $20,000 been donors to Children’s Mary) are carrying out the so far . And we look Craniofacial Association last wishes of Cynthia and forward to raising even for many years giving “in Bow, who requested that more! honor of Paige Wills, from in lieu of flowers to please Papa & Nonie .” Paige is send donations to CCA About Ryan their granddaughter, who in their parents’ names . Ryan Gulich, Jr., was born was born with Pfeiffer Friends and family are on December 16, 2001, syndrome . Daughter of honoring their memory to with Apert syndrome, n November 11, 2012 Heather and Reed Wills, benefit all CCA kids who which is a spontaneous we held our Annual Paige is now 11 and a will face surgery and other o mutation of a gene and Ryan’s Road for CCA confident CCA kid . challenges like Paige once affects abnormal growth of Bowling Tournament, Over the past three did . bones in the body, primarily and we were blessed by months, first Cynthia, and We are so very grateful the skull, midface, hands our family, friends and then Bow, passed away . for this generous family, and feet. community, who, year after In honor of their memory, the Wills, our first “Donors Apert syndrome occurs year, come out to support Reed and Heather, along in the Spotlight” of 2013 . in approximately one per CCA . More than 150 160,000 to 200,000 live Send us your people attended this year, births annually. Because cca mugshot mugshots! and we cannot thank them of the effects of this enough for supporting such syndrome our son has had a wonderful cause . Raffles 11 surgeries at Boston for the event included an Children’s Hospital over autographed Jim Kelly Hall the past 11 years with of Fame football, 4 tickets his most recent surgery to a Buffalo Bills game being a (Lefort III) midface won by Rodger Keenan advancement. and other door raffles . A very special thank you to Horizon Solutions, and Gas Field Specialists for being our main sponsors Jacob Dankelson (left) and Johnny Cipriano (right), sharing some hot chocolate after sledding. 9 pete’s oktoberfest chocolate festival 2012

hef Rick cChiavari and the Aventura Mall in Aventura, FL, teamed up on October 14, 2012, to hold the Fifth Annual Chocolate Festival for CCA . Chef Chiavari’s nephew, CCA he inaugural Pete’s Oktoberfest benefiting CCA kid Seth Swihart, and was held on October 5, 2012, by the Dankelson t his mom, Stacy Horne, family in Highland, MI . The day started with a traveled from Ohio to small golf tournament and ended with a fun represent CCA and Oktoberfest-themed party . The volunteer for the day . party festivities were quickly Local chefs, moved inside because of restaurants, kiosk Michigan’s unpredictable entrepreneurs and other weather . Everyone enjoyed businesses donated their music by Mr. Moody and time, talent and wares to Oktoberfest-themed foods the effort, and chocolate lovers by Sparkies Bar & Grill . A purchased tickets for $1 few did brave the cold, rainy each or $10 for 13 tickets, trading tickets for weather and stayed warm a taste of each full-sized treat . outside by the bonfire! The event grossed approximately Many thanks to everyone $15,000 for CCA . Many thanks to who supported the event, everyone who donated, created especially the student volunteers and tasted the yummy delights! who helped shuttle golfers, serve food and sell raffle tickets . The 2012 fundraiser grossed over $14,000 for CCA!

10 how to raise funds for cca CA depends on funds • Matching Gifts blue jeans . The donation tickets . Call CCA for cdonated by individuals, Many companies offer a is usually $1 to $5, more information . proceeds from family matching gift program depending on how often • Collection Cans Ask and friends’ fundraising that could double—or the event takes place local businesses to place efforts, corporate giving even triple—your gift (for example $1 for a a can or box (provided and foundation grants . to CCA! Contact your weekly donation, $5 for by CCA) to collect As the number of families human resources office to a monthly donation) . Any donations . CCA serves grows, so does find out if your company higher amount would be • Get On Board! Read the need for additional has such a program . at the discretion of the our newsletter and learn funds . So, any help our One family donated donor . about and participate in readers contribute is most $2,500 and had it matched • Civic Organizations the events, raffles and appreciated . Here are some in order to get their free Public awareness leads funding efforts of CCA ways to help . retreat hotel stay! to contributions . Contact and our supporters . And, • www.goodsearch.com • Planned Giving and solicit opportunities when you are finished (Powered by Yahoo) Enter Tax preparation time to speak to your local with your copy of our Children’s Craniofacial is also a good time to civic organizations newsletter, spread the Association as your consider long-term such as Rotary Clubs, news! Pass it along or beneficiary charity . (You tax savings . When you Kiwanis Clubs, even HOG leave it in a waiting only have to do this the consult an attorney or organizations (CCA has room . (Remember to first time . You may add investment professional many ‘biker’ supporters) . remove your address others if you wish .) CCA regarding your wishes for Distribute brochures label .) will receive up to a penny distribution of your assets and/or newsletters or • FirstGiving each time someone uses in your will, consider a other CCA-sanctioned There is a free customized the GoodSearch search provision for CCA . Your materials for awareness CCA “firstgiving” site for engine . planned gift in the form and information . Ask for anyone who wants help • GoodShop.com and of an endowment will live contributions . raising funds for CCA . iGive.com on after you . • Friends / Family Log onto firstgiving . Go to GoodShop com. • CCA Web Store Letter Appeal Draft a com/ccakids and tell your or iGive .com, online You can shop at www . letter to family, friends personal story or post an shopping sites, both promotes .me/cca for your and acquaintances— event you’re having . You featuring hundreds of T-shirts, mugs, caps and anyone who has met can even set a goal and great stores including more . So shop now and or encountered your track success! When you Best Buy, Macy’s, Apple, shop often! child . Contact CCA for a tell your own story about and more . It’s easy! Just • Clubs / Hobbies sample letter . your CCA Kid or why shop as you normally Have your club organize a • Kitchen Shut Down you are involved with would! You get the same benefit for CCA . Use your Raise funds by raffling CCA, folks will respond prices, but a percentage hobby or something you off chances to win meals because they know YOU! comes to CCA! love to do to raise funds . for every day of the • Cash for Trash! • Denim Days week, so the winner Save your discarded cell Raise funds at work can “shut down” their phones, empty laser / ink for CCA . Establish a kitchen . Local restaurants cartridges, GPS devices, special day or days for can donate meals or digital cameras, MP3 employees to make a coupons . This idea could players and old laptops . designated donation also be used for a week Call CCA for more (cash or check) to CCA of entertainment, such as information . in return for wearing movie rentals or theater 11 scott, from page 1 Robert “Scott” Guzzo latter was a challenge at was born two weeks early times . Scott had multiple on August 5, 1983, via an occurrences of respiratory emergency c-section . Dead distress where we almost silence in the OR . Nurses lost him . (Years later, avert their eyes; no one when we got a diagnosis wants to look at or speak of his syndrome, we to Dad . He was 2 lbs ,. 12 learned that the first two oz ,. a tiny, tiny body with a newborns known to have large, misshaped head and this syndrome died from a miniscule face . He had respiratory distress ). a cleft lip and palate and Scott did grow, slowly, almost no skull (but hair!), both in size and personality . club foot, etc . No one has By six months, he was up ever seen a baby that looked to a whopping 9 lbs . but, like this before . more important, the playful, procedures . After that, surgeries) with infant curious, laughing boy had the surgeries were more stimulation classes at the A couple days after Scott’s started to emerge . More rare and less critical, which ARC . He moved on to pre- birth, Paula was still an in- than anything, this told us allowed Scott to get through school for four years before patient at the hospital, and was (as well as relatives, friends the school years pretty much entering the public school having some very reasonable and health-care staff) that without interruption . Only in system, where he finished post-partum depression given a VIP was in that little the past two years has the high school in 2004 . our baby’s extreme situation. body . Scott couldn’t hold surgery schedule become The big deal with the We had a private room and the up his head (too big for intense — 11 times in the school system was moving third-shift staff was ok with his scrawny, weak neck), OR between November him out of the segregated me spending the night. They could barely roll from side 2011 and November special-ed class at a school gave me some surgical scrubs to side, fought infections, 2012, involving about 20 on the far side of the city to use as pajamas. I slept in the and had feeding problems, procedures, mostly eye- to his neighborhood school chair. Early the next morning, regurgitation and a lot of related . when he entered 3rd grade, I lay down in bed with Paula other physical issues . But his Scott is not afraid of the same year his brother to comfort her. The first-shift sneaky, funny, engaging self surgery . He goes in with a started kindergarten at the nurse knocked on the door and had us all trapped . good attitude and comes same school . This move opened it without waiting for a At three months, Scott’s out thanking the doctors enabled Scott to mingle and “come in.” She took two steps first surgery was bilateral and nurses for their good become friends with the into the room and saw me coronal craniectomies . care . Scott always tells the “regular” kids . Scott took in my scrubs, in the bed with At six months, he had a surgery staff “let’s rock this full advantage of his wit and Paula. She stopped in a frozen suboccipital (lamdoidal) place” and plays “Cotton- charm to develop lifelong state, stammered “Sorry, I didn’t craniectomy, cleft lip repair, Eyed Joe” on his iTouch friendships . To this day, know your doctor was here,” and bilateral myringotomies while the anesthesiologist old classmates are always and backed out of the room. We and ear tubes . At puts him to sleep . For him, quick to engage him during laughed till we cried. seven months, a Nissen it’s just another party that chance encounters in the Fundoplication and g-tube . happens to be with hospital community . The first three months Thus started the “surgery staff . Scott did not have a were devoted to growing years ”. By the time Scott Scott started “school” diagnosis until he was 10 and staying alive . The was six, he’d had 20 surgical in spring 1984 (after the years old — Crane-Heise 12 syndrome! Google it if He did well in school with an good restaurant is one you’re curious, and don’t adapted curriculum where with free Wi-Fi . dare say you’ve heard of it he participated in the same Scott listens to music before unless you already general education classes a lot (a lot!), plays the know Scott . Yes, he’s the as everyone else . He was a piano, loves concerts only known living person good reader before his vision and will belt out a song who is a certain match for problems two years ago, at the top of his lungs CHS . Not one in a million, and is starting to read again when the urge hits him . not one in seven billion, now that most of his eye Did someone say party? but one in … forever . There surgeries are over . Scott enjoys receptions are a handful of cases of While he doesn’t of all types (weddings, CHS births, but none other have the skills to live birthdays, conferences, than Scott survived beyond independently, he is an etc ). not because of the two weeks . Being the only active (oh is he ever!) and good food (he’s entirely known living person with appropriate participant in tube-fed) but because CHS, there’s no good answer social situations . Paula and there’s a DJ kickin’ out when we’re asked about I still get a kick out of his the tunes! He’s first on his prognosis, other than perception of issues and the dance floor and last years, he’s been a ticket- to say no one knows since his really good questions . off . The CCA dinner-dance taker at the local arena: there’s no precedent . In Scott often gets left out of is an annual highlight . Get mostly concerts, Evansville other words, he’s setting the conversations because of on his dance card early if you Aces basketball games and standard for anyone in the his speech difficulties or want to cut a rug with him . IceMen hockey matches . future with CHS . Obviously, because people don’t see Scott has been He likes the crowds and lots there’s no “CHS support him as an adult due to his volunteering at the local of people see him . He’s a group,” so you can imagine size . My advice: Talk to him public library twice a week favorite of the Icicles, the how much CCA helped fill as the adult that he is! Paula since high school (sorting promotional team for the that void for us . or I will interpret for you . music CDs for re-shelving) . IceMen . As I write this article, I When we fly to the CCA For the past five-and-a-half see , page 14 asked Scott what he wanted retreats, we bring Scott’s scott the CCA Network readers to manual wheelchair . He know about him now . “Tell hates that . When we drive, them I’m a bright young we bring the power chair . man, I’m not a baby (people That’s the independence think that all the time), I he likes . And, he can “burn use a wheelchair, I love my rubber” to “Wipeout” at iTouch, music and parties the dinner-dance . The iTouch (especially the CCA dance), is practically welded to his I have a job and volunteer hand: Facebook, email, at the library, I love to travel, news, weather, sports, and my brother Aaron lives markets (really, he checks in LA ”. daily to see if it’s up or So let me expand on down) and a couple hundred these . While there are things apps (most related to music that are hard for him, Scott in some way) . His idea of a has remarkable intelligence . 13 scott, from page 13 Free shipping cca web store

Scott loves to travel . Going amazed that Scott seems and seeing new places is a to find and meet as many thrill but his main thing is celebrities in a week in LA the hotel . And, he always as Aaron does in a year . Get Beyond the Face is a Heart and works the front desk for used to it, Aaron! NEW Wonder Wristbands! an upgrade . Sometimes it Looking ahead, we will CCA “Beyond the Face is a Heart” Wristbands: orange, lime, red and violet. Also available, the new Wonder “Choose Kind” happens! celebrate Scott’s thirtieth wristband! All are available in Adult 8” or Youth 7”–each only $1 Perhaps the biggest single birthday in August . Who event in Scott’s life was the knew he’d make it this far birth of his brother . As a five and be the force that he sponsors needed for year old, Scott so anticipated is? While he will always cher’s family retreat! Aaron’s arrival . Aaron may have physical limitations be Scott’s greatest source of that require assistance from n surveys CCA families have expressed to us that our pride . In many ways, even others, he has compensated iretreat is the most important program we offer . Did though Aaron has been with an equal set of emotive you know it costs Children’s Craniofacial Association 2,000 miles away for the skills that will serve him approximately $100,000 to hold our Annual Family Retreat past four years, Scott lives a well . He has already made each June?! big part of his life through his mark in this world and Cher usually sponsors our pool party for the weekend Aaron’s achievements . He touched the hearts of so event . From time to time we’ve had T-shirt sponsors . But, follows him religiously on many people . There’s little we are in need of more sponsors . If you know of anyone Facebook (careful what doubt he will continue who might be interested in supporting this worthwhile program, please have them contact our office . Email you post, Aaron!), loves to to enlarge his sphere of [email protected] or call 800 .535 .3643 . talk to him on the phone influence . Paula, Aaron and (“Hello, brat!”), cherishes I are honored to be a part Aaron’s visits home and can of it . Click on hardly wait for our annual pilgrimages to Los Angeles . Of course, Aaron is always Donate at ccakids.org 14 executive director, from page 1 on our all-new website at copy by calling the office ccakids.org/wonder.html . at 800 .535 .3643 or by magazine or newspaper . rest of the board and staff Our page includes links to emailing CCA’s Program All of these are great ways of its existence . When she standing ovation videos Director at AReeves@ to spread the word and read it she was blown away students created just for CCAKids . We will enclose hopefully foster acceptance by the author’s knowledge CCA kids . a teaching resource packet of those with craniofacial and the accuracy of her Early on it was very clear with your book order . conditions . perspective and of Auggie’s to us that CCA could be Please read the book and In 2012 a book was likeness to her own son, instrumental in helping get then share it—along with written that took the Peter, who has Goldenhar Wonder into the schools the information packet— potential for awareness to syndrome . and keep the momentum with your child’s school a level beyond anything Gradually other board of this book going, so (teachers, librarians and for which we could ever and staff members read the we contacted Random principals are good places have hoped . That book is book and started spreading House and developed a to start) . Ask them to read Wonder, by R.J. Palacio . the word and getting it strategy to promote the the book and consider Since you are reading into the classrooms of their book . We also created making it part of their this newsletter, you more children and those of family a packet of materials curriculum . Some schools than likely have heard of and friends . We also found that will aid educators in have selected Wonder for Wonder, because CCA has out that many schools and teaching Wonder . The an entire middle-school been emailing, Tweeting, communities were already packet includes two of read while others have Facebooking and doing reading Wonder . In fact, so CCA’s one-sheet overviews, incorporated it into their everything possible to many teachers signed up “empowering children to fourth- to seventh-grade promote the reading of this for the #WONDERschools cope with teasing” and reading programs . fabulous book . forum on Twitter that “fostering tolerance: ways Let’s make 2013 the The book is about Auggie Random House organized parents and kids can stand year of acceptance Pullman, a fifth-grader, a “Blog Tour” to share up to bullying,” as well for all kids with facial who has a craniofacial everything that was going as an online resources differences! To borrow a condition and until now on in classrooms . guide and an invitation to quote from Wonder, “It’s has been home-schooled . In response to the connect with one of our hard to blend in, when you But Auggie, who is an interest in Wonder, very own CCAWonderKids were born to stand out .” ordinary kid, with an Random House created (visit our Wonder page at extraordinary face, is about the choosekind.tumblr.com ccakids.org to download Char Smith to become the new kid at website, where you can copies) . CCA Executive Director Beecher Prep, where he will take the “Choose Kind” Our goal in 2013 is to have to convince his new pledge . There is even a get Wonder in the hands classmates to look beyond community read scheduled of students across the his face to see he is just like in California this spring in nation and to launch CCA’s them . which one of CCA’s kids, Choose Kind Challenge . Wonder first came to Peter Dankelson, son of In order to do that, we our attention through Darin and Dede Dankelson, need your help . CCA CCA Board Chair, Dede will participate . Other CCA has Wonder for sale and Dankelson . Dede heard efforts include selling the you can receive your about it and informed the book and promoting it 15 dallas holiday party

n December 8, CCA, Prizes included a gift otogether with Drs. card to the Magic Time Jeffrey Fearon, David Machine, Cowboys Genecov, Carlos Barcelo Stadium Tour Vouchers and Craig Hobar, hosted from the Dallas Cowboys, its 23rd annual holiday tickets to the Dallas Zoo party at Southfork Ranch, and Fort Worth Zoo, in Parker, TX . Around 500 signed merchandise from attendees joined us for a the Texas Rangers, morning full of fun! beach bags and more! Radio Disney was once As always, the highlight again the entertainment, of the party was the big midwest and everyone loved the guy from the North Pole, fun, music and games . The Santa Claus . Children holiday parents had as much fun as took their pictures with party the kids, especially during Santa, and everyone the dance contest . There went home with a for pictures on his lap . was cake and punch as keepsake photo and toy . Thanks, as always, to CCA well as arts and crafts . The CCA would like to he annual CCA Midwest Mom Marla Verdone kiddos decorated their own thank Southfork Ranch for tHoliday Party was held from Janesville, WI, who cookies and picture frames, hosting, as well as their December 1, 2012, at the helps each year and special had their faces painted, and wonderful staff! A huge Parkway Chateau/Brat thanks to Karen Tamley of their pictures taken with thank you to our wonderful Stop in Kenosha, WI . The Chicago, IL, for spreading the Texas Rangers mascot, volunteers from the Italian group had a pizza lunch the word about our party Captain, and even had a Club of Dallas, Tyler (or they ordered in from to more families! chance to get up close and Hanson and sponsor, KLS the Brat Stop) followed news good personal with some snakes! Martin! by brownies and cookies . They were also able to see Yum! a real fire truck, thanks to The usual holiday the Parker County fire crafts and visiting department! kept everyone busy, Families went home but of course the with lots of door highlight of the prizes, which were day was a visit from donated by several Santa and some local businesses . early gifts handed out as everyone posed financial assistance o you travel to receive quality medical care? If you do, and need financial help, CCA has a d­financial assistance program that will help with food, travel and/or lodging . Call CCA for an application at 800.535.3643 . All we ask is that you apply at least four to six weeks prior to your next appointment . 16 september is craniofacial acceptance month

Left to right: Jill Patterson, Martin Woodall, his year marks the ninth year CCA will observe Char Smith and Adam Carriker tSeptember as Craniofacial Acceptance Month across the nation . Each year CCA families, friends, volunteers and grants related support groups band together to widen the circle artin Woodall and Adam of acceptance for individuals with facial differences . The mCarriker of the Woodall goal is to create awareness of craniofacial differences and Foundation joined us at our Dallas to get people to see that “beyond the face is a heart .” Holiday Party to present CCA with a As part of the 9th Annual Craniofacial Acceptance check for $5,000 in grant funds to be Month, CCA will hold its 5th Annual National Picnic used toward scholarships for the Chers’ Day on September 7th (or other date in September of Annual Family Retreat . Thank you! your choice) . CCA families across the nation will hold picnics giving them a chance to get together with other CA was awarded a $6,000 partner families in their areas, while promoting awareness in their grant by Speedway Children’s c communities . Charities in Dallas . Funds will be used If you would like to hold a picnic contact CCA Program to produce and implement a school Director Annie Reeves. CCA will invite all of the families program to deter bullying and promote good news good in your area and help you organize your picnic. acceptance of differences . In addition to raising awareness and acceptance, CCA is raising funds to support programs and services available Go paperless and view the newsletter online in to all individuals with facial differences and their families . FULL COLOR! Email [email protected] and let her Contact CCA Development Director, Jill Patterson for know you want to save the environment and save money for CCA . materials about this year’s fundraising efforts . We hope you will join this important effort! Please call 800 .535 .3643 . gingertown more good news

ingertown was founded by David M . Schwarz The 3rd annual Dallas event was held at NorthPark gArchitects and began in 2006 in Washington D C. . Center on November 27, 2012 and the creations were as a one-of-a-kind holiday initiative that brings together auctioned on December 1, 2012 . NorthPark Center, one leading area architects, designers, and architectural firms, of America’s premier shopping destinations, prides itself in along with a community of building enthusiasts of all ages its ongoing commitment to the community and serves as to create a town made completely of gingerbread! And, host site for an array of important initiatives throughout it’s all for a good cause . The firm has since duplicated this the year, including the annual Gingertown Dallas . successful holiday event in both Nashville and Dallas . See Children’s Craniofacial Association is proud to have been Gingertown.org . chosen as beneficiary of the Gingertown Dallas proceeds Gingertown Dallas brings together talent from more and was recently presented with funds of $6,843 from this than 20 local design, engineering and construction firms wonderful community effort . Thank you, on behalf of all to create a gingerbread town . Each handcrafted structure our CCA Kids (like “Gingertown Dallas” on Facebook)! is auctioned to benefit a select children’s charity . 17 more fundraising news sydney raises funds for cca kids by Sydney’s mom, Jennifer

ydney Rose Ford chose to raise donations for her favorite charity, sCCA, instead of gifts for her 5th birthday July 23, 2012 . Sydney and her friends had fun dressing up as fairies, swimming, and watching a clown magic show . She handed out CCA information packets and raised over $130 . CCA has helped Sydney travel to her surgeon in Boston for cleft lip and palate repair over 7 times since she was born and her family hopes to “continue raising money for such a wonderful organization .”

whelan elementary school for cca by Stella’s mom, Chelsea

tella Francis Chicarella was born February 2nd, 2010 with mild sHemifacial Microsomia, affecting the left side of her face . She is unable to see out of her left eye but that doesn’t stop her from anything . She loves to sing, dance and do gymnastics . Most of all she loves her big sister Callie . Callie is in 3rd grade at Dr. Joseph Whelan Elementary School, located in North Providence, RI . During Craniofacial Acceptance Month, Whelan teachers and staff raised $150 for CCA Kids . Whelan Elementary School does amazing things for the community, always doing whatever they can for their students and their families .

moss haven elementary walk-a-thon

ellow students of Molly Bono, big sister of CCA kid, Sadie, visited our fCCA office for more insight about craniofacial conditions as they were reading the book, Wonder . Each year, their school hosts a Walk-A-Thon for a cause that affects a member of the community . This year, students walked laps (the “Walk-A-Thon”) during elective class periods and had an opportunity to wear pajamas or a hat to school in exchange for a donation to CCA! Each class also read a picture book about people looking different . A big thank you goes to Coach Sharon Barnes, the coordinator for the event, the 4th grade Destination Imagination team who helped facilitate everything with the students, and the entire Moss Haven Elemenatary community of families! The effort garnered over $400 for CCA Kids . 18 be brody’s calendar of events date event contact angel 2013 Apr 17-18 2nd Annual Morgan Meck’s hroughout the year, friends Match Play Invitational [email protected] tand family of CCA Kid, Coto de Caza Country Club Brody Lucas contribute Coto de Caza, CA toward the “Be Brody’s Angel” effort to raise funds for all Apr 26 Texas Moms’ All the Way Becky White for CCA Golf Tournament [email protected] CCA Kids in Brody’s name . This year over $1,200 came in, Battleground Golf Course thanks in no small part to Brody’s grandparents, Ann and Houston, TX Don Lucas and friends like Bill Peck and Tracey Fisher . Jun 27-30 23rd Annual Cher’s [email protected] Family Retreat 214.570.9099 CCA Mom, Jennifer Lucas also hosted a Pampered Chef Orlando, FL 800.535.3643 party and the Lucas kids helped with CCA Wristband sales September 9th Annual Craniofacial [email protected] and donations of their own . Thank you Everyone! Acceptance Month 214.570.9099 Nationwide 800.535.3643 Sep 14 Seth’s Stride Stacy Horne Canton, OH [email protected] Sep 27 6th Annual Links of Love [email protected] Golf Tournament 214.570.9099 Bear Creek Golf Club at 800.535.3643 DFW Airport Dallas, TX

looking for a reliable matching gifts e encourage you to consider maximizing the shipping Company? wimpact of your donations through your company’s Matching Gifts program . Please contact your Human oad Scholar is an that: “Our Point of Delivery Resources department to see if your company will match asset-based motor is Your Point of Sale .” If r your donations to double your contributions for CCA! freight company based you are looking for custom out of Scranton, PA with freight solutions that save terminals throughout you money and service that the Northeastern United exceeds your expectations, States . Their staff is waiting then give Road Scholar a to provide you with the call today at 800 .542 .2301, highest level of service . or visit their website, www. children’s They represent their roadscholar.com . Be sure to craniofacial customers from the belief request the CCA truck! association

state assistance: · Free pick-up · Tax receipt given id you know that many states offer funding/ · Easy & convenient dsmall grants to individuals with disabilities and their family members to attend advocacy, learning events and conferences? The CCA Retreat qualifies because of our educational symposium . If you would like more information 877.570.4222 regarding your state assistance program, please visit ccakids.org/state-funding.html 19 donors, january 1 – december 31, 2012* Lisa Crawford Kim Insook Penny McKee Colleen & Walt Reinert Gifts from Jeffrey & Janet Cree Caroline Jackson Kimberlee Marie McMillian Jodi Reinert Individuals Brian & Amy Crue Abigail & Kenneth Jaffe MD Ellen McPadden Nicole Reinert Saler Barbara Crump Greg Janicki Matthew Medici Doris Repshis CCA Supporters Greg & Nikki Davies Lynn Jaskowiak Mark Meeker J. & B.L. Riese (up to $100) Dammy Davis Russ & Carol Jenna Barbara Mellendorf Lorenzo & Nicole Rinaldi John & Linda Davis Richard & Margo Johnston Jean Merchant Jean Robertson Marcia & Wayne Abbott Milton & Yvonne Davis Rhonda Jones Paul & Laura Merrion Caroline Robinson Roscoe & Jean Abbott Val & Ashley Davis II Sidney & Katheryn Jones Deborah Miller Sarah Rocha Amy Abernathy Gloria B. Dawber Trust William & Gretchen Jones Larry Miller Joseph & Marilyn Roche Chris Adams Casey Deakins David & Mary Jordan Rev. Gerald Miller Mona Roche Thomas Ahearn John & Anna Dean Melissa Jurek James J. & Mary Jo Montalbano Michael Rodell Mike & Susan Akin Barbara Deaverws Berlin Kaplan Russell Moran J.C. Rogillio Theodore & Loralee Alexander Irma Deluna Theodore Kalivas Jessie & Theodore Morgan Vincent & Marion Romano A.M. Alford Russell Dennis Stephen & Mary Ellen Karenitsky Mary Ellen & Gerard Morgan Allan & Lisa Ross Carolyn Alloway Michael DePalma A.E. Karpen Kim & Jack Morris Larry Rounds Carmen Amparan Josephine & Frank Deronja, Jr. Kim Kawalski James Morris Judith & Joe Rowe Viega Anderson Louis Desanto Kenneth & Mary Kenelly Andrea Mottram Heather Ruegg Jacqueline & Mark Angelilli Patricia Dimaggio Kent Kelly John Moulton Gladys Runnels Anonymous Robert & Erin Dinsmore Michael & Kathryn Kevany Bari Mummey Amanda Rushing David & Bobbie Art A.Dodson Robert Kiehnle Karen Mungioli Susanne Rutila John & Virginia Ashby Melissa Dougan Kevin & Sandra Kineane Rae Gene Mungioli Brian Ryba Jan Attaway Mike Dowd Bruce & Karen Kirk Virginia & Luke Mulherin Daniel & Kelly Sakkinen Daniel & Joanne August Jill Draluck Kendall & Susan Klinge David & Paula Mullins Sonya Saladine Tracy Backer Lacy Dreger V.W. Klink Jennifer Murphy Elie Saliba Julie Baird Michael & Storm Dunham Stefanie & Richard Knauss Lisa Muurisepp Julie & Nicholas Salomone Tom & Marianne Baird Renee & Adam Duvall Audri Kocsis Robert & Diane Nagle Cindy Samhammer Christine Barrett Thomas & Lana Elliott Michael Kogut Melissa Chancey Najera Mark Sanborn Robert & Mary Beck John Emminger Sondra Kratt Paula Naquin Fayeann Sandstrum Theresa Beijerbergen Jeremy Fee Nick & Tina Kresic Janell Nelson Phyllis Saucier Winell Belfonte Lynn Flores Vivian Kudej Arthur Nendza Robert & Michele Sauer Davina G. Beltran Gregory & Karen Fontaine Paul Kyle Ann Nesbitt Paul Savage Simon Bench April Fontana Barbara Lancaster Megan Neumann Roberta & Robert Schini, Jr. Kathleen Best Jennifer & Josh Ford Merlyn & Barbara Langton April Newton Lisa Marie Schlemmer Paul & Donna Bereyso Elizabeth & Lawrence Forte Benjamin Larrick Paul Netzelman Dominic & Kristen Scopacasa Kristi & Bobby Bickford Nancy Fossee Richard Laude Patsy Ng Christopher & Susan Seabold Yael Blasberg Anna Fowler Stephen & Bernice Lawlor Jeffrey Nicholson Daphne Sellers William Charles Bluman Daphne Fox Reed Lawson Paul Niebruegge Patricia & Jeffrey Sharpe Gary Bones Tammi R. Froning Michael & Lynn Lenkiewicz Rob & Jackie Nierman E.B.Sheinbaum Bordonaro Family Mike Fuhrman Daniel & Carol Lentz Tyann Nordness Dale Shephard Zach Bordonaro Dr. John & Florence Galida Melissa Leverett Jecksan & Yolanda Ojeda Kimberly Shepard James & Irene Brady Mary Kay & Thomas Gardin Harriet Loub & Arthur Levine, MD Mary Ortega Donald & Marna Sheppard Amber Brarens Charles Giblin Linda Stark Litehiser Patricia Osborn Paul & Denise Silverman Richard & Rae Brigger Frank & Maryann Gilson Terry & Cheryl Loffler Charles & Connie Ostrander Leonard Siegel & Julia Pogach Thomas Briner Debbie & W. Dean Gingerich Veronica Logan Mary Lou Owen Rafael Ignacio Sierra Lynn K. Britt Rabbi Jonas & Chelly Goldberg Duane Long Dawn Page Christine Sikes J. Patrick & L. Michele Brockette Max Goldstein Ernest Loper II Lynnette Pagnini Ann & Anthony Silano Cheryl Papciak & Jerry Brooks Kiera Goral Carly Loth Michelle Parker-Velas Darcy Sims Joe Brooks Ruby Gorman Sylvia & John Loving Andy & Heather Parsons Eugene & Alethea Single Jeffrey Brown A.M. Grathoff Samuel & Kathleen Lowery Mark & Kathy Pattison Kathy & Curtis Skropits Robby & Linda Brown Robert M. Grathoff & Ann M. LeDuc Kenneth Luby Trudia Pauley Kristi Slimak Thomas & Sharon Brown Angie Greenlaw Renee Lucckino Jessica Peaslee Charles Sluman Tim & Kellie Brown Mary & T.J. Guercio Jr. Edwin & Susan Lyons Anne Peterson Cheryl Smith Sheila Buchtel Gaby Guevara Betty Major Cynthia Peterson D.J. & P.S. Smith Curtis & Denise Burris Jeffery & Brandee Guyton Claresa Mandola Janice Phillips Dennis Smith Patsy Burt Jones Joseph & Patricia Gwozdz Annette & Kenneth Manganello Tracy Popescu James Smith Michael Cahill Alfred Harf Stephen & Diane Manning Vicky Porter Jennifer Smith Ann E. Call Brenda Hargrove Debbie Maples Joan Poston John W. Smith Rene Campbell Christy Harrington Sanford & Mildred Marateck Janice Phillips Kent Smith Louie Cannarella Ian Harrop Donnie & Wonda Martin Derek & Emily Pratt Monique Smith Dana & Rhonda Carley Douglas Hartley Kathleen Martin Susan Preston Thelma Kathleen Smith W. Reid & Kerry Carlisle Kevin & Ellen Haugh Susan Martin John & Rebecca Primeau Katherine Snyder Joren & Debra Carlson Tina Hazzard Marty Mashe Joseph Propri Steven Sokach Clarence & Charlotte Carpenter Rodney & Lucy Heddleson Albert Mata Mary Purcell Michael Spirawk J. Davis Carpenter Brie Nicole Hernandez Victoria Mata Robert Raike Francis Stanford Beate & Patrick Cavanaugh Donald & Marlene Hibbard Paula Maurer Charles & Marty Ann Rakiecki Daryl & Allison Standridge Linda Chamberlain John & Kathryn Hibler Warren McAllister Richard & Donna Reddy Candace Stapleton Robin Chapurtinov Beth Higgins Stephen & Lisa McBride Barbara Redman Gregory & Geralyn Stark Annette Chen Shanna & Steve Hillerich Mary & Edward McCarthy Annie & Tommy Reeves John Steffen Barbara Chernetz Roger & Teresa Hinkley Madeleine Cherry Kari & Kali Hitzel Kelsey Chiavari Joyce & Thomas Hoffman David & Kris Ciccolo Cindy & Stephen Hofft Donna Clark Stormie Holguin *Listed are all Monetary Donations through 4th quarter, 2012. We are extremely grateful for these and all other fees, purchases, Kellli Clark McBride Andrea Horsch fundraiser, cash and in-kind donations, not individually recorded here. Elizabeth & Mark Clayton Jacqueline & William Horsfall Maureen Cleary Kristin Houston *MMM = Morgan Meck’s Match Play Christine Clinton Sarah Huge We do our best to accurately recognize donors. If you notice an error, please let us know. Harold & Gail Cohen Mary L. Hughson Elvera Colon Stephanie Huston Extraordinary Fundraiser Sponsorships of $1,000 or more are also listed. Elizabeth Cox CFC (Combined Federal Campaign, federal-employee giving) 20 Kristina Stege Scott Wynne Bunsiri Frazier registration is open Erin & Crispin Stephens Cheryl Youngs Mary & Harry Froelich Thomas Stephens Dayna Young Patricia Galietta Linda Stewart Valerie Zecchin Andrew & Jennifer Gillette for 2013 annual Lawrence & Jill Stopczynski David Zweier Susan Golden Michael & Susan Stoudt Jonathan Goldsmith cher’s family retreat Daniel Strack CCA Friends David Goldsmith Carol Strickland ($100 +) Robert Goldstein June 27-June 30 in Orlando, FL Eleanor Strony Beth Abel Gostovich, DMD PA Kristina Stege Chris Abel Jim & Kelli Griffin William & Nancy Suwalski Lisa Boyd Sue Grisgsby Please join us for an educational symposium, Lisa Swan Amy Ahrens Lenore & Jerold Grubman MD Elizabeth Sweeney Jennifer Anderson Dale & Jan Haase pool party, ice cream social, dinner/dance and Marie Sylvester Michael & Kelli Anderson Edna Hager Kathleen & Marcel Szal Ruth Anderson James & Holly Hamilton much more! For more information, Beth Szela Anonymous Linda Hanes Dennis & Sharyn Tafts Carol Anthony Douglas & Michelle Harshbarger please contact Annie Reeves, Katherine & William Harvey, MD Lori Takeuchi Paul & Leann Appel Ann Talcott Mildred Armstrong Norman Hatch [email protected] Jasmine Tangcay Terry Lynne Ausmus Rae Haught We hope to see you there! David & Stefanie Taylor Ellen Batterton J.James & Arleen Heirty Gary Taylor Michael Beasley Craig & Charlene Henderson Hurry! Registration ends May 24th. Marc Taylor Nancy & Brian Beebe David & Ginger Henshall Christine & Ronald Telford Dorothy Bennett Matthew Herrick Truman & Mary Terrell III Robert Billotti Cheryl Hlad Anita Tharp Michael & Lisa Bock Patrick Horne Jerome & Kathryn Penna Hunter William Abby Thomas Yvonne & David Boon Andrea Horsch Edward & Kelly Pobur Robin Williamson Glenn Thomas Steve Bouker Dolores Horton Cindy Podner Reed Wills Sherry Thompson April Bousamra Marne Housey Thomas & Carol Porter Mary Zimmerman Renee Thurston Dave & Gretchen Bremer Albert Hughson Jr. Aaron & Dana Pulver Anne Tibbals Michelle Bridgins Justine Humphrey Ann Ranfranz CCA Companions Neva Tomlinson Thomas & Sharon Brockhaus William Hunter Letitia & David Rastigue ($250 +) Timothy & Brenda Tompkins Daniel Ingram Ann & William Burgin Robert & Luwanna Ratliff Anonymous Brian & Janice Thornton Abigail Jaffe Gary & Anita Burt Donna Rea Blanche Austin-Ames Cathleen Tobin Susan Jayne Bryce & Diana Butler Brandye Renfroe Carl Bach Lucy Torres Holly M. Jenkins Ronald Caloss, Ed.D. Joel & Laurie Rhew Erik Bauman Jean & Thomas Townsend Susan Johnson Larry Carpenter Andrea Richard, D.O. Maureen Blaker Robert & Suzette Trent Kathryn H. Jordan, TTEE Tamra Carter Chris Riener Alida Boon Emily Tull Doug & Kirsten Jumper Maureen Gonta Castellana, DDS PC Kevin Charles Riley Darren & Chris Bowden Meghan Tull Joseph Kiefer Michael Clay Kenneth & Donna Roberts Judith Breznay Marianne Uhazie Luanne Kines Robert & Kristan Clifford Jeoffrey & Elizabeth Robinson Melissa L. Brown Diana Vallobera Kathryn J. Kitchens Judith Clonan Jessica Roche Lorrell Bush & Colleagues Marie Volansky Richard Kinas Sandra Cloninger Mary Carroll Roche Dan Butler Kay Van Cleave, PH.D. Ronald Kitson Charles & Michelle Clum Mary Alice Rogers Jeffrey Lloyd Christian James VanDorn Charlotte Kowitch Sean & Jessica Coen John & Christina Rome John Clay Peter & Patricia Vantil Stephen & Mary Krenitsky Pete Collins K.R. Rossington Jeanell Cox Dwight & Carrie Vaughn Roger & Carolyn Lamb Michael & Libby Conway Marie Rourke George Dale, Sr. Sara Vela Sylvia & C.K. Lawson Matthew Coven Mrs. Michael Rourke Margaret Jenna & John Dalton Maria Ximena Vicuna Ian Leisegang Matthew Cowen Michael Royal Ruth & Gerald Dankelson Susie Vizvary Jess Leyva Beverly Crider Marjorie Rubacky John & Michele Donley Lucia Vulaj Zayne Lisenbee Robert & Christy Crouch Susan Ruehle Amy & William Downs III John Yorio Matthew Long Judith Cunningham Helen Salsbery M.Drew Robert Yusinski Tye & Michele Long John Curtis Robin Schueler James Dufficy John & Mary Wagner Jeanne Longwell Charles & Maureen Dale Ray & Laurie Sherrod Deena Dyson A.J. & K.C. Walters S.F. Luhrs Jonathan Dale Courtney Shipley Kevin & Nicole Elston Heather Ward Lenia Magne Dennis & Tena Dameron Fred Siyufy Richard Faulkenberry Louis & Francelle Ward Mary Beth Mann Kathleen Danielson Linda Snyder Heath Fisher Karen Waring Beth & Richard Marsden Charles and Ashley Daugherty Dean Spanos John & Carrie Follett Judy & Ronald Warunek, Sr. James Mather Luis Davila & Lucy Torres Kevin & Kimberly Spillane Joshua Gilcrease John & Benita Wasilisin Tonya McGary Theresa & Andrew DeGuire Michael & Ann Steffen William Gorman Jennifer & Paul Wayne David McNeil Marlene Deily Erin Stephens Martin Grupp Natalie Weber James McPadden DeLynn Denton Leo & Kerry Stermole Jennifer Grupp Barbara Weideman Deborah Mecklenburg Louis C. Difabio II Mark & Kara Summers Geoff & Lori Gunn Harvey Weiner & Susan Kava Matthew & Deborah Meeker Timothy & Diana Dixon Brenda & William Thorpe Sharon & Melvyn Gutkin Kay Whitney Maria Melillo Debbie Dornier Don Trapp Jake Halbmaier Joanie Wiinblad Robert Metafora Charlene Doster Richard & Lori Urso Sarah Hall Amanda & William Willet Anthony & Carol Midey Sue Dunn Mary & Larry Updike Jackie Halpin-Osteen Rebecca Williams Joseph & Karen Monastra Deena Dyson Edgar & Joan Vallar David Hardt J.B. & Cynthia Wills Jane Monnell Mario & Rebecca Emiliani Scott Vanetten Darryl & Christine Heckle Saskia Wilder Laurie Monnier Scott Erdman Dennis & Robin Vargas Christopher Hood C.M. & Leila Wiley Marie Moore Catherine Erlacher Dwight Vaughn John & Margaret Ingram Elaine Williams Cecil Morgan Jr. Jess & Alice Evans Ronald & Erica Verkleeren John & Maurita Kapp Tommy & Deborah Williams Dr. Anne Morgan Paul & Michelle Fahey III Daniel Vieira Arden & Judith Kemler Donna Wilson Erica & Jacob Mossholder Edward Fanning Kathleen VonRaesfield Brian Kern Kris Wilson Kimberly Mryglot James & June Fanning Mary Walker T.J. Kiczenski Rose Wilson Hykel & Amanuel Mulugeta Vicente Farina & Leigh M. Soda Michael Walters Arie Krie Tammy Blessinger Wilson Joseph Murphy Deirdre Farrell Richard & Christine Warner James & Julie Kucko Kevin & Melissa Winters Dennis & Carol Naylor Carl & Julia Feichtel Mark & Natalie Weaver Jonathan D. Lucas Dr. John & Mary Wittgen Rita Nolting Carol Feldman Robert Whitaker Kelly Marsh Angela Wojtyniak Michael & Marti O’Brien Michelle & Joseph Ferguson Kevin White Christopher McGhee Greg Wood Beth & Sean Oneill Jarret Fino Max White Pat McLaughlin Christi Woods P.L. & M.J. Pagliaroni Frances Fisher Melissa Wiaduck Heather Miller Peterson Christopher & Lori Wright W.L. Parker Tracey Fisher C.M. & Leila Wiley Yvonne Mojica Julia Wright Ann Patterson & Howard Langner Debra Fragola David & Nancy Winters Dennis & Robin Morgridge Chris & Nancy Wyant Bill Peck 21 Joe & Alison Morrissey M. Brian Evans Mary & Robert Beck, in honor of Rabbi Jonas & Chelly Goldberg, in Laurie Monnier, in honor of Jeremy Glenn Neubauer Jeffrey Fearon, MD Freddie Seitz honor of Deena Coplin’s birthday Dale Teresa & Matthew Nicholas William C. Godfrey Kathy Berrier, in honor of the Mickley Jim & Kelli Griffin, in honor of Annie Erica Mossholder, in honor of Meg James Oh Kirk Gregg Family September CAM# Picnic Reeves’ birthday Gray’s birthday Steven Page Tom & Donna Leonhardt Fundraising effort Joseph & Patricia Gwozdz, in honor of Erica Mossholder, in honor of Annie Adam Perkes Molly & Robert Lytle Yael Blasberg, in honor of Annie Kate Rogers Reeves’ birthday Heather Peterson Darlene Manwaring Reeves’ birthday Jackie Halpin-Osteen, in honor of John John Moulton, in memory of Carol Dale & Kathleen Philippi Ron Micetic Bordonaro Family, in honor of Jill Gorman Moulton Shelley Potter Carl & Kathy Michaelsen III Patterson’s birthday wish Alfred Harf, in honor of Chase Ingram Hykel & Amanuel Mulugeta, in honor Denise Riffle Kevin O’Reilly Zach Bordonaro, in honor of Jill Arleen Heirty, in memory of Eileen of Amanda from LaPlata, MD Jeoffrey & Elizabeth Robinson Greg & Jill Patterson Patterson’s birthday Henson Robert & Diane Nagle, in memory of Michael Schnur Paul R. Pokladnik Lisa Boyd, in memory of Jolan M. Jim & Arleen Heirty, in memory of Ann Cynthia Wills Tony R. Tripeny Robert & Karen Reader Sentendrey Alexander Ann Nesbitt, in honor of Megan Cronin Gary Uttke Blair Schrum Veronica Boyd, for all the kids on Jim & Arleen Heirty, in memory of Milly and family Marcia Weber Michael & Shelly Sprague Christmas Day Aske Mary Lou Owen, in memory of Cynthia Andrew & Amy Weinraub Heather Switzer Cheryl Papciak-Brooks, in honor of Joe Jim & Arleen Heirty, in memory of Jean Wills Joslyn Verona Brooks’ birthday wish Johnson Susanne Palombo, in memory of CCA Extended Family Bradley Walsh Joe Brooks, in honor of Jill Patterson’s Jim & Arleen Heirty, in memory of Cynthia Wills ($500 +) Mike & Rose Wiese birthday Sharon Minor Jill & Greg Patterson, in honor of Joe Anonymous Sarah Zimmerman Joe Brooks, in honor of Annie Reeves’ Jim & Arleen Heirty, in memory of Brooks’ birthday wish Adrianne Ariglio birthday Mildred Jill & Greg Patterson, in honor of Charles & Eleanor Berglund CCA Patron Ann & William Burgin, in memory of Jim & Arleen Heirty, in memory of Ann Melanie & Chris Pipkins nuptials ($2,500 +) Deborah & Justin Bono Rick Dornier Marie Sansone Jana & Hugh Peace, in honor of Jimmy Maria Amelio Jessica Blue Patsy Burt Jones, in honor of Annie Jim & Arleen Heirty, in memory of & Beverly Butera Anonymous James & Martha Brown Reeves’ birthday Dorothy Zelanko Jana Peace, in honor of Annie Reeves’ Dan & Denise Paulson William Burns Jimmy & Beverly Butera, in honor of Beth Higgins, in honor of Kim Grant birthday The Estate of Jean Pond Beverly & Jim Butera Jana & Hugh Peace Beth Higgins, in honor of Mary Clarke Michael Peloquin, in honor of Joe Charlene & John Smith Tracey Carragher Lorrell Bush & Colleagues, in honor of The Hitchcock Company, in honor of Brooks’ birthday E.C Styberg Roger S. Chin DDS, PS Captain Bob Ratliff Kristine Dale Tracy Popescu, in honor of Luke Bowen Marty & Mike Willson Craig Cooper Andrew Bustillo, in honor of Morgan Joyce & Thomas Hoffman, in memory Thomas & Carol Porter, in honor of Joseph & Anne Zaengle Matthew & Nicole Cowen Mecklenburg of Cynthia Wills Sydney Rose Ford Sharon Doyle CCA Staff, in memory of John James Christopher Hood, in honor of Trevor Colleen & Walt Reinert, in honor of CCA Benefactor Heirty Layrs Annie Reeves’ birthday Fred & Judi Freeman ($5,000 +) Beth Gibson Rene Campbell, in honor of Luke Andrea Horsch, in memory of Stephen Jodi Reinert, in honor of Annie Reeves’ Tate & April Gorman David Bresnahan Bowen Haycraft birthday Shelly & Dennis Green George & Kristine Dale Larry Carpenter, in honor of Cher’s Kristin Houstin, in honor of Deena Nicole Reinert Saler, in honor of Annie Cheryl Gridley Dede & Darin Dankelson birthday Coplin’s birthday Reeves’ birthday Mark Hagan Bob & Paula Guzzo Larry Carpenter, in honor of Cher at John & Margaret Ingram, in honor of Mary Carroll Roche, in memory of Catherine Harper Greg Luetkemeyer Christmas the Ingram Family Cynthia Wills Lisa Helseth John Mahoney Donna Clark, in honor of Luke Bowen Abigail Jaffe, in honor of Jen and Adam Marjorie Rubacky, in memory of Christopher Hood Thomas Gillingham John Clark, in memory of Christine Kellogg Cynthia Wills Clayton & Kathy Huck Clark Rhonda Jones, in honor of Luke Bowen Rose Seitz, in honor of Joe Brooks’ Robert Kacer CCA Guardian Elizabeth & Mark Clayton, in honor of Berlin Kaplan, in honor of Deena birthday Kim & Urban Koagedal ($10,000 +) Sydney Ford’s birthday Coplin’s birthday Rose Seitz, in honor of Meg Gray’s Bill Leary Anonymous Maureen Cleary, in honor of the Cronin Luanne Kines, in honor of Joe Brooks’ birthday Paul & Fran Leatherwood Bill Mecklenburg & Christine Condino- Family birthday wish E.B.Sheinbaum, in memory of Cynthia Chris Lederer Mecklenburg Christine Clinton, in honor of Annie Kathryn J. Kitchens, in honor of Wills Ann & Don Lucas The Estate of Andrew & Juanda Reeves’ birthday granddaughter, Brisa Dougan Dale Shephard, in honor of Megan Mary Lytle Seventy Elizabeth Cox, in honor of Nova Cox V.W. Klink, in honor of Salem Mickley Cronin Doug & Janis Macut Judith Cunningham, in honor of Elijah Stefanie & Richard Knauss, in memory Ray & Laurie Sherrod, in honor of Annie Brandon Martin CCA Legacy Society Dinsmore of Cynthia Wills Reeves’ birthday David & Deborah Meeker Dede & Darin Dankelson Luis Davilla & Lucy Torres, in honor of Charlotte Kowitch, in memory of Christine Sikes, in honor of Casey Robert & Margaret Mitchell Joy & Rod Strickland Jaylin Davilla Cynthia Wills Deakins Joe & Allison Morrissey Dede Dankelson, in honor of Annie Kerry Reed Lawson, in honor of Joe Paul & Denise Silverman, in memory of Michael & Marti O’Brien Reeves’ birthday Brooks’ birthday wish Cynthia Wills James O’Sullivan Memorials / Dede Dankelson, in honor of Francis Duane Long, in honor of Casey Charlene Smith, in honor of Joe Katherine Olsen Smith’s birthday Deakin’s birthday wish Brooks’ birthday In-Honor Gifts Dede Dankelson, in honor of Meg Sylvia & John Loving, in honor of Ryan Char Smith, in honor of Ron Micetic Matthew Osburn Family Chris Abel, in honor of Max Abel Jana & Hugh Peace Gray’s birthday Holliday Char Smith, in honor of Jill Patterson’s Jennifer Anderson, in honor of Annie Dede Dankelson, in honor of Jill Ann & Don Lucas, in honor of Brody birthday Norma & H.W. Peace Reeves’ birthday James Reading Patterson’s birthday Lucas, “Be Brody’s Angel” Charlene Smith, in honor of Francis Ruth Anderson, in memory of Cynthia Gloria B. Dawber Trust, in memory of Molly & Bob Lytle, in honor of Avery Smith’s birthday George Rodriguez Safford Wills Randolph Schaefer Cynthia Wills Betty Major, in memory of Cynthia Wills Thelma Kathleen Smith, in honor of Anonymous, in honor of Deena Michael DePalma, in honor of Deena Sanford & Mildred Marateck, in Meg Gray’s birthday Fred & Rose Seitz Coplin’s birthday Ann Sickles Coplin’s birthday memory of Cynthia Wills Ann & Michael Steffen, in memory of Anonymous, in honor of Alice Athena Chad & Shannon D’Gerolamo, in Kathleen Martin, in memory of Cynthia Kevin Wilson Amanda Smith Esparza Joyce & Rodney Strickland memory of Rick Dornier Wills John Steffen, in memory of Kevin Anonymous, in honor of Joe Brooks’ John & Michele Donley, in memory of Kimberly Martin, in memory of Ellery Wilson Joslyn Verona birthday wish Josh Warren Cynthia Wills Walker Michael & Ann Steffen, in memory of Anonymous, in honor of Meg Gray’s Debbie Dornier, in memory of Rick Susan Martin, in memory of Ellery Kevin Wilson Jennifer Webber birthday Kenneth Wilson Dornier Walker Eleanor Strony, in honor of the 50th Anonymous, in honor of Roy Dennis Deena Dyson, in honor of Printer Kelli Clark McBride, in honor of Joe anniversary of M/M George Lesko, in CCA Sponsor Anonymous, in honor of Francis Smith’s Chicks Brooks’ birthday Jeremy Dale’s name ($1,000 +) birthday M. Brian Evans, in honor of Erica Ellen McPadden, in honor of Jeremy William & Nancy Suwalski, in memory Anonymous, in honor of Nick Wiese Mossholder Dale of David Temple David Armstrong Anonymous, in memory of Cynthia Richard Faulkenberry, in honor of Ron Micetic, in honor of Jonean Parker Lisa Swan, in honor of Luke Bowen Kathy Berrier Wills Constance Abrams Ron Micetic, in honor of Char Smith Ann Talcott, in memory of Cynthia Wills Veronica Boyd Anonymous, in memory of Kevin Wilson Richard Faulkenberry, in honor of Dale Ron Micetic, in lieu of Christmas Gifts Diana Vallobera, in memory of Cynthia Andrew Bustillo Terry Lynne Ausmus, in honor of Natalie D. Gorman from the Micetic Family Wills Chris Campbell Wardlaw and in memory of Cecelia Carl & Julia Feichtel, in memory of Deborah Miller, in memory of Cynthia Priscilla G. Voss in honor of the work of Michael Carr Guerra Cynthia Wills Wills the Mecklenburgs Diana Critchlaw Tracy Backer, in honor of Michael N. Anna Fowler, in honor of her 2 sons, Rev. Gerald Miller, in memory of Louis & Francelle Ward, in honor of Ann & Ari Deshe Gruber Jr born with clefts Cynthia Wills Brisa Dougan Adam Driscoll Julie Baird, in honor of Annie Reeves’ Mary Kay & Thomas Gardin, in honor of Susan Miller, in memory of Cynthia Jennifer Webber, in honor of Madelyn Denise Duby birthday Natalie Wardlaw Wills Webber 22 Andrew & Amy Weinraub, in honor of Huron Valley State Bank for Pete’s Slavin Construction for Friends of The David M. Schwarz Architects $1,000-$5,000 Max Weinraub Oktoberfest Jeremy Foundation Be Brody’s Angel / Lucas Family Max White, in honor of Wade Tinsley Interludes Spotmaster of South Florida, Inc. for Simmons Rockwell for Friends of CCA Chance Raffle / Annual Family White IBM Employee Services Center the Chocolate Festival Jeremy Retreat Attendee Participants Reed Wills, in honor of Cynthia Wills (employee giving) Steve’s Discount Muffler E.C. Styberg Foundation, Inc. Griffin Davies’ Fundraising Effort / Marty & Mike Willson, in honor of James Benedict Trucking LLC for Rick’s Swan & Sons-Morss Vivo Brothers Wristband Sales & Awareness Avery Lytle Raffle Talisman Energy for Friends of Jeremy Do Yoga, Do Good in honor of Nova Greg Wood, in honor of Deena Coplin’s Jay C. Service Inc. TheraPros, LLC for Raegan’s Rally CCA Corporate/ Cox / Ananda Yoga, Justine Budhram birthday Joy’s Pooch Parlor for Trevor’s Trip to Thompson, Coe, Cousins & Irons, LLP Foundation Partners Luke Bowen’s Jammin’ Jeans Week Triumph Time, Inc. $5,000-$10,000 / Judy Kemler & Flower Mound HS Lee Law Offices Tobacco Special Racing for Raegan’s Faculty Corporate/ KRP Trucking & Excavating for Ryan’s Rally American International Group for MMM* Rick’s Raffle / Established by Ann & Foundation Gifts Road Truist for Qwest & UPS (employee Doug Burgin Ken’s Service Center for Ryan’s Road giving) The Chatlos Foundation Cher Charitable Foundation Sadie’s Night / Bono Family with Lake CCA Corporate/ Keyport Matawan Elks #2030 LGCCC Turnberry Ocean Colony Master Assoc. Highlands High School Baseball Team for Trevor’s Trip to Triumph for the Chocolate Festival Lexington Insurance Company for Foundation Friends MMM* Trevor’s Trip To Triumph / Family of Kidder County Public School for Mrs. The Vantage Group LTD for the Trevor Layrs up to $1,000 Heier’s Jr.High Family Consumer Chocolate Festival GMI, Inc. for MMM* A.J. Miller Mechanical Inc. for Pete’s Science Class Bake Sale United Way of Greater Milwaukee The Redwoods Group for MMM* Speedway Children’s Charities $5,000 or more Oktoberfest Kleen 1, LLC for the Chocolate Festival (donor-directed donations) Raegan’s Rally / Ashley & Boz Ables Electrical Knights of Columbus St. Lawrence for United Way of Greater Philadelphia Triangle Foundation Martin Woodall Foundation, Inc. Daugherty Afghans & Accents for Ryan’s Road Griffin Davies’ Fundraising effort (donor-directed donations) Robbie’s Haircut / Mike Wiese, America’s Charities funds management Last Man Standing Club 2009 United Way of National Capital Area CCA Corporate/ Janis Macut & Retreat Attendee American Express Charitable Fund Lee Law Offices (donor-directed donations) Participants (employee giving) Lindenhurst UFSD for Lindenhurst H.S. United Way of the Southern Tier Foundation Leaders Ryan’s Road for CCA / Gulich Family American Legion Knowles Doyl CCA Wristband Sale (donor-directed donations) $10,000 or more AT&T (United Way Employee Giving MacDonell Associates for Pete’s United Way of Tarrant County (Bell B.B. Owen Trust $10,000 or more Campaign) Oktoberfest Helicopter Employee Giving) The Hartley Company Chocolate Festival for CCA Kids / BC Restaurant Group for the Chocolate Mario’s Cleaning Services, Inc. for the VFW Post 6393 Chef Rick Chiavari in honor of Seth Festival Chocolate Festival VA Home care LLC for Trevor’s Trip to Swihart Bank of America (United Way Employee Mark J. Gordon Foundation for the Triumph Fundraising Pete’s Oktoberfest / Dankelson Family Giving Campaign) Chocolate Festival Visions Federal Credit Union for Friends Bank of America (Matching Gifts from The June and Cecil McDole Charitable of Jeremy Events & Other $20,000 or more 2012 North Texas Giving Day) Fund for Pete’s Oktoberfest Wiegand Heating and Cooling for Efforts Hartley Golf Outing / Hartley Company, Beer Family Insurance Agency, Inc. for Olga & David Melin Foundation Griffin Davies’ Fundraising effort Cambridge, OH Trevor’s Trip to Triumph Mengel, Metzger, Barr & Co. LLP for X-gen Pharmaceuticals Inc. for Friends Up to $1,000 Ben E. Keith Company for Links of Love Friends of Jeremy of Jeremy Bake Sale / Kidder County Public $30,000 or more Best Buy Co., Inc. Mesquite Trail Drivers Assn for the Xtreme Machines for Trevor’s Trip to School / Mrs. Heier’s Jr.High Family Friends of Jeremy Golf Tournament / Brown & Brown of Florida, Inc. for the Mason Leibham fundraiser Triumph Consumer Science Class Dale Family Chocolate Festival Micetic Insurance Services Your Cause, LLC (Dell Employee Giving) Barefoot Books Sale / Deena Dyson Morgan Meck’s Match Play Cambridge Chapter Women Moose Microsoft Employee Giving Matching with Kathleen Von Raesfield Tournament for CCA / Mecklenburg Cameron Manufacturing & Desing Gifts Program CCA Corporate/ Joe Brooks’ Birthday Wish on Facebook Family Chemung Canal Trust Company for Minier Brothers, Inc. for Ryan’s Road Foundation Sponsors / Joe Brooks Friends of Jeremy MissionFish (EBay, directed donations $1,000-$5,000 Cash cans /placed by Kim Rogers, Chemung Valley Veterinary Clinic for thru percentages of sales) BP Corporation of North America, Bradley, IL Friends of Jeremy New York Life Insurance (Employee CD Sales / John Moulton Columbia Gulf Transmission Co. Giving) Inc. (toward the Hartley Company fundraising effort) Be Brody’s Angel / Brody Lucas’ Family (employee matched gifts) North Miami Cleaners, Inc. for the Fundraising Effort Complete Security Systems for Trevor’s Chocolate Festival Bristol-Myers Squibb Foundation (Employee Matched Giving) Deena Coplin’s Birthday Wish on Trip to Triumph Northpark Presbyterian Day School for FaceBook / Deena Coplin Corning Credit Union for Friends of Sadie Bono Night The Brotman Foundation Car Inc. Trust / Charitable Auto Do Yoga, Do Good / Ananda Yoga, Jeremy Northrup Grumman Employee Giving Justine Budhram 2012 F Corning Dental Associates RLLP for Orthodonic Associations of the So. Tier Resources (Proceeds from Auto AMIL Donations by supporters) Film Festival for CCA Kids / Nick Wiese GOAL THERMOMETERY FUNDRAISER Friends of Jeremy for Ryan’s Road & Friends of Jeremy & Cranberry Cinemas Courser for Ryan’s Road PASCO Consolidated Sales and Engineering by Mike Wiese Nora Fleming Fundraising Effort / Nora Crowley Family Dentistry PLEJ Battery, Inc. for Ryan’s Road Fleming & Friends CT Morgan Inc. for Raegan’s Rally PWC Children’s Medical Charities CFC 2008 100% Consolidated Sales and Engineering Sydney’s 5th Birthday / Sydney Rose $215,000 Cycles at 117 LLC for Trevor’s Trip to Parameter, Inc. for Friends of Jeremy Ford Triumph Parsons Collision Repair for Raegan’s Corning Beagle Club for Friends of Jeremy Meg Gray’s Birthday Wish on FaceBook D&K of Chemung, Inc. for Friends of Rally / Meg Gray Jeremy Petroleum Women’s Club Dartmouth-Hitchcock Foundation 90% E.C. Styberg Foundation, Inc. Indoor Flea Market / Anjolene Whaley 80% Dandy Mini Marts, Inc. for Ryan’s Road Pfizer (United Way Campaign employee Pete Dankelson’s Fundraising Page / Dell Employee Giving / Matching giving) Encana Natural Gas / Employee Giving & Matched Gifts Firstgiving Online through “Your Cause, LLC” PitPower Sports LLC for Trevor’s Trip to Garage Sale / Michelle Bridgins Dignity Health Triumph Exchange Club of Lake Highlands 70% The Max and Victoria Dreyfus Moss Haven Elem Walk-a-thon / 60% Directed Technologies Prudential Foundation (matched gift of Sharon Barnes & 4th grade DI Down Syndrome Information Network Diana Critchlaw) Foundation Go Realty Team Dr. Joseph Whelan school (Whelan Prudential Foundation (employee Pampered Chef Sale / Stacy Elementary Funder) giving) Guy Carpenter & Company for MMM* 50% Hardinge Inc. for Friends of Jeremy Swihart 40% Dr. J’s Inc. for Trevor’s Trip to Triumph Random House, Inc. (employee Annie Reeves’ Birthday Wish on Dunning Motor Sales for Raegan’s Rally matched gifts) The Hitchcock Foundation Horizon Solutions LLC for Ryan’s Road Facebook / Annie Reeves The Elena Melius Foundation Rowe Woodworking Studio for Friends Francis Smith’s Birthday Wish on Eliminator Performance Products for of Jeremy Jenkins Gann Foundation KLS Martin L.P. Facebook / Francis Smith 20% 30% Pete’s Oktoberfest Ruby Tuesday for Friends of Jeremy Waco Picnic Funder / Carmen Emerald Isle LLC for Pete’s Oktoberfest SCR Design, Inc. for Pete’s Oktoberfest Kohl’s Metal Parts & Equipment Co. for Pete’s & Ron Mickley Funding Factory Safeway, Inc. (purchases percentage Whelan Elementary Funder / Gym Kidz for the Chocolate Festival incentives) Oktoberfest Micetic Insurance Service for Links of Teachers & Staff 10% Hargrove Oil Company, LLC St. Thomas Aquinas College for Alie Wristband Sales for CCA Harley-Davidson of Long Branch for Cobo’s Wristband Funder Love Michael Klein Foundation for the / St. Thomas Aquinas Trevor’s Trip to Triumph Sarah Hall Productions College & Alie Cabo Heart of Illinois United Way, Inc. Security & Investigative Services, Inc. Chocolate Festival Hudson & Marshall, LLC for Links of for the Chocolate Festival Orange County United Way / CFC Love ServU for Friends of Jeremy (Directed Donation for MMM*) Skyway Precision Inc. for Pete’s Partner Reinsurance Co. of US for Oktoberfest MMM* 23 children’s craniofacial association 13140 Coit Road, Suite 517 • Dallas, TX 75240

Honorary Chairperson: Cher

Board of Directors: Dede Dankelson, Chair, Highland, MI George Dale, Corning, NY Tate Gorman, Dallas, TX Paula Guzzo, Evansville, IN Margaret Lavender, Fort Worth, TX Janis Macut, Harrisburg, PA Bill Mecklenburg, Mission Viejo, CA Erica Mossholder, Huntsville, AL Robin Williamson, Carrollton, TX

CCA Network Editor: Kelly Liszt

CCA Network Design and Production: Robin Williamson, Williamson Creative Services, Inc.

Executive Director: Charlene Smith

Program Director: Annie Reeves

Development Director: Jill Patterson a three- to four-hour drive, My son bounced back especially in the winter time . after surgery fairly fast and Administrative When we found out is doing very well . I am so Coordinator: about Keegan’s diagnosis, relieved we got him the Jana Peace we knew it would be hard medical care he needed to to afford the many trips prevent any future damage, voice 214.570.9099 for medical care, plus the and it would not have fax 214.570.8811 lost pay from time off been feasible without the toll-free 800.535.3643 work during his surgery generosity of CCA . They url CCAkids.org and recovery . After some really took a load of pressure research I found Children’s off by helping out financially Craniofacial Association, and having such an The views and opinions expressed who helped us financially educational website to use in this newsletter are not necessarily those of CCA . with travel, food and as a reference, and one day lodging . Also, their website I will be in a position where I If you no longer wish to receive this testimonial can pay it forward . has very helpful information newsletter, please send an email to Michael, Tiffany, Big Brother and a list of certified care Michael, Tiffany, Devin and AReeves@ccakids com. or mail the label Devin and Keegan teams with experience in Keegan to the CCA office and ask that ur 10-month-old son, treating patients just like it be removed from the mailing list . “Keegan, recently had my son . Although I wasn’t If you know of someone who o would like to be placed on the surgery to correct metopic able to use a specialist on ­mailing list please forwar­ d to us craniosynostosis . We live in a the list, I was able to ask ” their name and address . rural area in eastern Oregon, a few of the specialists where seeing a specialist is about recommendations . 24