THIS ISSUE OF THE CCA NETWORK IS DEDICATED IN MEMORY OF ASHLEY BARCROFT & PHOENIX COLEMAN

ccanewsletter of the children’s craniofacialnetwork association Cher—national spokesperson 2014: Issue 2 inside cca kid ian bibler ...... 2 cca adult jessica barbalaci ...... 3 cca supersib eli bibler...... 4 morgan meck’s match play...... 5, 14 horseheads, ny...... 10 all the way for cca. . . 11 message testimonial...... 12 calendar of events. . . 12 from the ucf: awareness for program social change...... 13 life is full of miracles By Jeannie Ewing director retreat sponsors . . . . . 15 wonder t-shirts...... 15 arah has always been somewhat of a medical marvel; an you believe the sadie’s night seven the events leading up to and surrounding her cretreat is already over? at the ball park. . . . . 18 birth have left many people at the very least speechless Time sure does fly when stormbringer for and more often riveted and enraptured by her little life you are having fun! The stephanie sumpter. . . . 19 that is still unfolding each day . She was born with Apert 24th Annual Cher’s Family craniofacial acceptance syndrome, but, like most parents who have children with Retreat was held in St . Louis, month ...... 19 varying forms of craniosynostosis, we were oblivious to Missouri June 26th through any sort of red flags concerning her development, at least state assistance...... 19 29th, and was officially the prenatally . largest retreat to date! more fundraising news . 20 I quickly dismissed the idea of prenatal testing when given One hundred thirteen how to raise funds the opportunity by my family doctor during one of my later families attended from for cca ...... 21 obstetrics visits, and he never pushed the issue further; 33 states with one family good news . . . . . 22-23 that fleeting moment in which I was given a decision that coming from Canada . Of rick’s raffle ...... 24 could have helped me determine whether or not something the 113 families, 32 families might be wrong with the baby passed without much of were first-time attendees . an afterthought . Beforehand, however, I did consider the Our home for the weekend was the historic St . possibility of genetic testing, but the reason I declined was Louis Union Station Hotel . twofold: one, I am an incessant worrier and knew if the Union Station, the busiest results returned with less-than-stellar news, I would quite train station of its time, was plausibly jeopardize the health of the baby by my fretting, and built in the 1890s and still see sarah, page 16 see program empowering and giving hope to individuals and families affected by facial differences director, page 6 ccakid

ight-year-old Ian he has been doing for the eBibler is having one last three years . Right now fantastic summer . The he’s a blue belt . He has soon-to-be third-grader has also played lacrosse for gone to camp at a local the past two years . During high school, visited his the summer, however, aunt and uncle in Baltimore you can catch Ian and his for a week and has made older brother, Eli, duking it to the neighborhood it out with water balloons . water park a few times to (In fact, right before he whoosh down his favorite was about to interviewed, water slides . He’d done all Ian and his brother were this by mid-July (the time of right in the middle of a his interview), so he’s been particularly spirited water- quite a busy guy . And, oh balloon skirmish .) yes, he got to see not one, Ian’s all-time favorite but two fireworks displays movie is The Hobbit, with on the Fourth of July! Frodo being his favorite Another favorite thing character . He likes the TV Ian likes to do is collect show “American Ninja seashells . Good thing he Warrior,” and he’s a big lives near Ponte Vedra fan of rapper TobyMac . He Beach in northeast Florida, has a dog named Casey, a home to some of the most four-year-old Shih Tzu mix, gorgeous—and seashell- who weighs in at just 13 rich—beaches around . pounds . This fall, Ian will be Ian has Treacher Collins, going to a new elementary syndrome and when school, as his school district strangers ask about his meet ian bibler rezoned . Many of the same face, he politely tells them neighborhood friends will everybody is different and be going with him to the he was born this way . He new school, too . Ian is doesn’t worry going into looking forward to getting a surgery or a procedure . back to science class—his “Stay calm,” he says, favorite subject . “because God is always After school, Ian takes with you . karate classes, something 2 meet jessica barbalaci

i, my name is Jessica best and gotten through hBarbalaci , and I’m 20 it . One big achievement years old . I live in Trenton, I have accomplished was New Jersey, with my graduating high school . parents, Bette and CJ, and I attended Conwell-Egan my older brother, Michael . Catholic High School in I have a dog named Kasper Fairless Hills, Pennsylvania . and a cat named Little I’ve done a lot of things Rascal, who are both while I was in high school . rescue animals . I was in the school choir I was born with a cleft lip and drama club, and I was and palate . I’ve had seven on homecoming court my surgeries, the first one senior year . Although it when I was three months may have been tough at old . I just had another times, I did have a lot of one in July, hopefully fun . my last one . I don’t like Now I am off to surgeries very much, but college at Mercer County with my amazing doctors Community College in New at Children’s Hospital of Jersey, where I’ll study to friends from many different see that we are all just Philadelphia I always come become a Special Education places, and it is always so normal kids who like to do out looking great . They teacher . I know it will be much fun . normal-kid things, even have done so much for challenging, but I am ready Another thing that has though we might look a me, and I am so grateful to for it . I am very excited to been cool is I got to meet little different . It has been a them . start a new chapter in my Lentil the French bulldog great experience for me . One thing I have always life . puppy who was also born I hope you liked getting struggled with is school; Some things I like to do with a cleft lip and palate . to know me a little better . I have always tried my when I am not in school are He is so sweet and one I’ve had a pretty tough singing, dancing, acting, of the coolest dogs ever . life so far, but I’m a pretty going to Philadelphia Plus his mom Lindsay tough girl . And I’m excited Phillies games, watching Condefer is pretty cool, to see what the future hockey with my family too . Lindsay and Lentil even holds for me . and going to see one of came to retreat with us last my favorite singers, John year . That was a lot of fun . Eddie . I also really love I have also been involved going to CCA retreats every with being a “Wonder summer . I have made many Kid” (along with my friends Danny and Connor) and going to different middle schools in New Jersey, talking about the book ccagrad Wonder and helping kids 3 meet eli bibler Living with Treacher Collins syndrome

ould you be scared The main problem of wif you were born Treacher Collins is a lack with a birth defect? Would of bones in one’s face . you be sad if people When his face was being stared at you when you go formed his treacle cells places? What if it was your stopped reproducing, so face that made you look the bone in his ears, eyes, different from everyone cheekbones and jaw didn’t else? Well, this is what it’s fully develop . like for my little brother, The physical features of Ian . Treacher Collins include Ian was born with downward-slanting eyes, Treacher Collins syndrome a smaller lower jaw, lack eight years ago . Treacher of eyelids, high palate, Collins syndrome is a facial malformed ears and amazing surgeon . This and pointing at Ian’s face . birth defect so rare that conductive hearing loss . smart and talented doctor Sometimes they even say it is found in only one The eyes are often referred has helped regrow and rude and mean things to out of 50,000 babies . In to as “sad eyes .” The form my brother’s jaw two him . When I read the book, Maryland, where we were small jaw meant he could times already in his short Wonder, I knew just how born, there were only not breathe well enough life . With these surgeries, Auggie’s big sister, Via, three other children with on his own, nor could he Ian is in extreme pain, felt . Yet, I realized how sad Treacher Collins in the eat on his own . And since needs a feeding tube to and frustrating it was for entire state . The hospital Ian’s ears are really only eat, and has lots of swelling Auggie too . pediatrician actually had little lobes he is considered which takes weeks to go When you have a family to Google Ian’s symptoms profoundly hearing down . Remember, Ian is member with a birth defect after he was delivered . impaired or deaf without a only 8 and has about 10 it can be hard, but most Pretty unimaginable, don’t hearing device . to 12 more years of these days it’s okay . I know God you think? If all of this medical stuff necessary surgeries . has given Ian so much sounds complicated, you Being Ian’s big brother is, courage and a great are right, it is! Ian has well, I’m not sure . For me, personality to be able to had 17 surgeries at all I see is my little brother live with Treacher Collins . three nationally Ian with long surfer hair But Ian isn’t the only one recognized who tries to karate chop living with Treacher Collins, hospitals but and kick me all the time . my mom is, my dad is, my most of them So at home, being his grandparents are and so in Cincinnati, brother is easy . Yet, when am I. Ohio, where we are in public I see other my parents people, mainly kids, staring found an ccasupersib 4 2014 morgan meck’s match play

to contribute more than peer groups and lifetime $80,000 to benefit friends for CCA siblings . Children’s Craniofacial The event’s Platinum-level Association . sponsors were EverGuard As Morgan stated in Insurance and SES her opening speech, the Insurance Brokerage tournament is now officially Services, Inc. Gold-level a “tradition” that brings sponsors were Kevin and n May 7 and 8, Bill together great friends from Jennifer Trapani, Maria oMecklenburg and across the country as a Amelio, Greg and Donna Christine Condino- fundraising and awareness- Bonnell, Blair and Shelley Mecklenburg hosted building “destination Schrum and Zurich the third-annual Morgan event .” Coto de Caza North America . Silver- Meck’s Match Play Golf and Racquet Club level sponsors included Invitational benefitting was the host venue and all Lexington Insurance, CCA . After two days out-of-town participants John Carr / CSI Insurance, and 36 holes of golf, stayed at the Laguna Cliffs Andrew and Eileen the championship was Marriott Resort & Spa Bustillo, Jenelle Harmon ultimately decided with a in Dana Point, California . and Ryan Vallone, Shelly sudden-death match play Private dinners were held Soenen and Michael contest, with Eric Miller, at Hanna’s Restaurant Sprague, Mike Del Robert Reader and Gabe and Bar in Rancho Santa Giorgio and Tracy Kish Munoz claiming victory Margarita and at the Vue and Partner Reinsurance over the first runners-up Restaurant overlooking Company . Jeff Patty and Robert the Pacific Ocean in Dana CCA and the Kacer . Maria Amelio Point . Mecklenburg won the Women’s CCA dads, Darin family would like Championship for the Dankelson and Tate to thank all of third consecutive year, Gorman, truly moved the the volunteers, and Ian Leisegang won group with their tributes to participants, the individual Low Gross their sons, Peter and John, contributors and Championship . and the miracle work CCA auction-item The true champions were does for CCA kids and their donors who our CCA kids, who inspired families . Darin also spoke have made this a this small group of friends about the critical role the memorable and and corporate sponsors retreat plays in creating meaningful event .

See list of donors, sponsors and participants on page 14. 5 program director, from page 1 After meeting for breakfast bright and early has many of the original a child with complex Friday morning, we set out architectural features craniofacial conditions, for a trip to the huge, 90- today, including the Grand positive communication and acre St . Louis Zoo . Families Hall with its sweeping individualized educational got up close and personal archways, fresco and gold- programs . In addition, there with lots of amazing leaf detailing, mosaics and were panel discussions animals such as lions and Tiffany glass windows . for parents, siblings and tigers and bears…OH MY! Nightly, our families affected adults . Panel And, the fun continued trick . Meanwhile, the teens enjoyed remarkable, 3D members included: Tommy Friday evening at the were lounging by the pool, light shows projected Dale, Sarah Klinger, Anne traditional family night having dinner and hanging on the 65-foot, arched Moore, Amelia Sanborn, and teen party . As usual, out . ceilings, and during the day Darin Dankelson, Eric families from across the Saturday the families explored the original details Lucas, Alison Morrissey, United States and beyond gathered for the traditional in this vast structure . Liz Prince, Rob Gorecki, brought baskets of goodies big pool party . Several Thanks to modern Francis Smith and Meg from their areas for CCA years ago a water-gun fight technology, many of our Storie . To close the to raffle . These baskets between two separate new families and those symposium, CCA’s Board of held everything from sports teams was started at who had not attended Directors held a welcome souvenirs and memorabilia, the pool party . Each and previous retreats became session that included an to local food specialties and every year more and more friends on Facebook and overview of the organization everything in between . The kids and over-grown kids through CCA’s Yahoo and future plans . Thanks to generosity of our families (A .K .A . CCA parents) have Group over the past year, all for a very informative, never ceases to amaze us . joined one side or the so the initial “get-to- productive day . While parents were buying other . You can only imagine know-you” period was We kicked off the retreat raffle tickets and stuffing the absolute chaos and fun taken care of before we on Thursday evening with them in the raffle bags, that took place this year! even arrived at the retreat . an ice cream social . Families the rest of the crowd was Saturday evening‘s Family members were glad participated in an ice being entertained by a dinner-dance is a family to finally meet in person breaker, setting the stage quirky clown . She really favorite, and this year was and immediately made and mood for meeting had the crowd engaged no different . But before the connections . one another and making and even managed to pull festivities began, we took a Dr. Earl Gage of St. Louis connections . a few of our CCA dads up few moments to honor the Mercy Children’s Hospital on stage for a really cool memory of long-time CCA and craniofacial team member John Moulton members DeAnn Wilson, who passed away this Lauren Watson, Dana past year . Many thanks to Kiley and Dr. Gregory Casey Deakins who put Robinson generously gave together and presented a of their time and expertise beautiful video tribute and to conduct the 6th Annual Elizabeth Erickson who Craniofacial Symposium as made a memorial quilt did CCA family members, signed by CCA families and Paula Guzzo and Rose given to John’s family . Seitz . Presenters discussed This event was followed topics including esteem by a presentation for CCA’s building, behaviors for executive director, Char friendships, caring for Smith . June 1st marked 6 Lisa, Logan, Landon and Steve Brown a very special milestone . Char celebrated her 25th reflections anniversary with CCA . To By First-Time Retreat Attendee Lisa Brown honor her for 25 years of efore I settled back and made the choice to dedication, CCA Board into the daily routine be a part of this journey, I Chair Bill Mecklenburg b of life, I took some time to feel that my life has been called Char up on stage reflect on the past five days forever changed . and presented her with a of an amazing experience: So, what do I take away beautiful Tiffany-crystal my family’s first CCA from this experience? vase and gave a heartfelt Retreat in St . Louis, MO . I take away the sense speech . It was a very I have seen all the Facebook of acceptance, being touching night and there posts and pictures over part of another family, a These parents get it… were tears flowing . the past few years of much bigger family with they’ve been on the front After everyone previous retreats, and have delightful people who have line and know what it’s congratulated Char, really wanted to go, but “walked the walk,” if you like to hear the constant the dancing began and for many reasons I have will, and have felt the pain beeping of the hospital continued long into the been dragging my feet on of witnessing their child’s monitors, the needles and night! For the first time planning this trip for my surgeries and struggles . IVs (oh, those dreaded ever, the crowd was family . Some reasons were Even though we didn’t needles!), the pain begging the DJ to play one the timing of surgeries, necessarily discuss all of our management, the devices, more song! Steve’s work schedule and surgeries and experiences the tube feedings, the Sunday morning is always being able to take off the with each other family-to- anxiety, sleeping on those the hardest . There were time that the retreat was family, I felt there was an awful hospital chairs (or not lots of hugs, promises of scheduled . unspoken comprehension sleeping at all), the swelling staying in touch and, as But also it was my of what we’ve all been after surgeries, (I know I’m always, a few tears . We fear of the unknown . through . I thought to leaving out a lot of medical really enjoyed meeting all Apprehension seemed myself: events here), signing and of the new families and to have kept me from catching up with our old choosing to register, mostly see reflections, page 8 friends who have attended because I didn’t feel like in the past . We hope I was ready . I knew that everyone had the TIME OF registration is now attending a retreat like this THEIR LIVES! might force me to face Registration is officially open for 2015 annual and relive some emotions open for the 2015 Annual all over again and I was cher’s family retreat Cher’s Family Retreat in worried that it might not Newport Beach, and we June 25-June 28 be what I expected, or hope to see you all there! wanted from this trip . Who in Newport Beach, California Now please enjoy reading wants to go on vacation Please join us for an educational symposium, beach about first-time retreat with the possibility that attendee, Lisa Brown, and party, ice cream social, dinner/dance and much more! it might turn out to be her family’s experience . depressing and emotionally For more information, draining? please contact Annie Reeves, Annie Reeves Luckily, this retreat was [email protected] CCA Program Director quite the contrary! And now that we have finally We hope to see you there! taken the opportunity, Registration ends May 22, 2015. 7 reflections, from page 7 each other with kindness . able to really I’m certain that I am not leave it all attending hundreds of IEPs, the first parent to point behind, is the and advocating for your out how empowering the ultimate . child on so many levels . retreats seem to be for our To sum it Although our social kiddos and their siblings, to all up, I take media provides great tools know they are not alone . away a new for connecting with others, When I asked my kids sense of there’s something to be and husband how they felt belonging; said about face-to-face about the retreat, this was and as a first- interaction, and perhaps their response: Logan, 12 time retreat this is what makes it so (with Apert syndrome): “I parent, now I surreal . As a parent, it actually just felt like was therapeutic to finally a normal guy around connect with people in here .” Landon, 9: person who understand “I had so much fun, where you’re coming and I made so many from, regardless of which new friends!” Steve: craniofacial syndrome or “I had a great time diagnosis your child has, getting to meet so and getting the chance many new families . to discuss not only the Being able to ask difficulties our children questions and also have faced or will be help by answering facing, as well as the ones questions for others we as parents face, but who had younger also celebrate the obstacles children was very and challenges they have rewarding .” get it . We do belong! We do overcome . I truly feel this was a have something in common I also take away pivotal moment in our with other families! We do friends, and I cannot wait satisfaction in seeing our lives . Going on vacation is not have to feel like “that until the next retreat when kids take ownership, with always the highlight of the family” who has problems, we meet again! confidence, in who they year, but to take a vacation with “that child” who has Thank you Char, Annie are and where they fit surrounded by people so many difficulties . We and Jill for your dedication into this world, especially whom I know I don’t have are accepted! We are not in serving all of the CCA as other children who are to worry about the stares, alone! Regardless of the families and the many ways “like” them, as well as or whispers or what they miles in between us, we you make a difference in so their siblings, surround are thinking, and just being have made some lifelong many lives!

8 2014

9 horseheads, new york school district brings wonder to students

hen Jeremy entire Horseheads Middle video that asked them makes them different and wDale walked into School . their favorite part of the how to choose kind . his school library at the Eight hundred seventh book and what character Then Jeremy visited their beginning of the school and eighth graders, along they most related too . school to answer questions . year and asked his new with the entire staff, Two hundred students One of the highlights was librarian, Sarah Jones, if read the book Wonder attended the live assembly when Jeremy took off his they had any Stars Wars in February 2014 . Live and sported their “I Read prosthetic ear and passed books, she was blown readings of the book were Wonder” t-shirts . The rest it around! The kids were away . Sarah had read recorded by several staff of the school watched so inquisitive and curious Wonder over the summer members and broadcast the presentation through about Jeremy and his likes but she hadn’t met Jeremy throughout the school . a live broadcast in their and dislikes . They treated yet . One look at him and During the all-school read, classrooms . him like a celebrity! Their his similarities to Auggie many students participated At the same time the celebration ended with (right down to his love of in discussion groups, middle school students all of the students writing Star Wars) brought tears wrote their own precepts, were reading Wonder on words of kindness on to her eyes . She instantly explored ways that made their own, three third grade papers that were taped to saw the possibilities of them “different” and teachers at Horseheads everyone’s back . Jeremy bringing this book to the signed the Choose Kind Ridge Road Elementary gave CCA Choose Kind Horseheads Middle pledge . school were reading the bracelets to all of the School . With the help The all-school read book to their classrooms . students and they gave him of a grant from The wrapped up with a final While reading the books a huge standing ovation! Community Foundation assembly, where Jeremy to their students, Kelly Thank you to all of the of Elmira-Corning and shared information about Murray, Kelly Wolf and WONDERful students and the Finger Lakes, Inc., CCA and his real-life Kim Balliet were able to staff at the Horseheads Sarah was able to purchase “Auggie” friends . Several have great discussions with School District who choose books from CCA for the students and staff were their students on what kind every day! interviewed for a short 10 Diamond ($3,000 or all the way for cca more): USA Environment, Empowering awareness and advocate Motivated Women; for our kids as if they were Platinum($2,000-$3,000): your own . It takes really J2S Services, Triple special people to do that . B Services, F.I.R.S.T., Also, very special The Craniofacial thanks to Sarah Collins and Plastic Surgery with Maddie Dean Center of Houston, Photography . For the Gold ($1,000-$2,000): he Texas Moms held second year in a row and Inflight Outfitters, ttheir third All the Way third CCA event, Sarah Hufco, ISB Capital, for CCA Golf Tournament has volunteered all the Cima, Divicom Inc., April 25th, 2014 at professional photography, Southwest Airlines, RS Battleground Golf and this year recruited her Graphics, International family to come 10 hours Long Shoreman’s Course in Deer Park, Texas . handing out awards and We had a great day of golf from home to participate Association and Max Con in our tournament . Sarah Construction . Thank you posing for photos . with perfect weather . Our Can’t wait for next year! event included games on is now officially another so much for supporting our the course, silent auction surrogate CCA Texas Mom . kids . and lunch with an awards Thank you Sarah! Each golfer received a ceremony . We also had a Lastly, we need to goodie bag filled raffle for two Benelli Super give recognition to with coupons, a Black Eagle shotguns . Top Brittany Severin, at the CCA newsletter ticket sellers for those Craniofacial and Plastic and various were Jim Chapman, Surgery Center Houston . other items . The Cheri Bauman and Rick She has gone out of her Houston Texans Dupuy—they really got our way two years in a row to Cheerleaders fundraising rolling! help us raise awareness made an All in all, we raised more in the community and appearance and than $36,000 for CCA! volunteered countless stopped for But, we couldn’t have hours for our event . Thank photos with all of done it without constant you so much, Alisa, Lynna, the players . They support from our amazing Sarah and Brittany—we were a great hit! friends and supporters, are so grateful for all you This year, three Alisa Shelton and Lynna helped us accomplish over CCA kids joined McGuyer . For four years the years! us at the event— you both have given We had a tremendously Wade White, selflessly, and we are so fun day with 22 teams of Ashley Bock and very grateful . You raise four generous golfers each, Jakob Happ . It who all said was nice for the they had a golfers to see great time! firsthand some of We want to the kids they were give special helping . The CCA thanks to our kids who were sponsors, there assisted in 11 calendar of events date event contact 2014 Aug 16 4th Annual Trevor’s Trip to [email protected] Triumph Motorcycle Ride for CCA Morganville, NJ September 10th Annual Craniofacial [email protected] Acceptance Month 214.570.9099 Nationwide 800.535.3643 Sep 6 Raegan’s Rally/Walk for CCA Ashley Daugherty Deerasic Park [email protected] Cambridge, OH Sep 6 Ohio Picnic Meg Storie 1-4P Bexley Recreation and Parks [email protected] (Memorial Shelter) Columbus, OH testimonial Sep 12 7th Annual Links of Love [email protected] Golf Tournament 214.570.9099 Bear Creek Golf Club at 800.535.3643 DFW Airport CA has been a blessing made it possible for us to Dallas, TX in our lives . Jay was take Jay every time that Sep 13 7th Annual National Picnic Day [email protected] c 11A-1P Sandy Lake Amusement Park 214.570.9099 “born in 2006 with bilateral he has an appointment or Carrollton, TX 800.535.3643 cleft lip and palate . He surgery . Without them, I Sep 13 Illiinois Picnic Amber Harrold also suffers severe hearing don’t know that we would Noon-5P Starved Rock State Park [email protected] Oglesby, IL loss in his right ear due to be able to get Jay the care that he needs when he Sep 13 New Jersey Picnic Gary & Nancy Merrill cholesteatomas . 1-5P 16 Gallant Fox Rd. [email protected] We moved to the needs it . Tinton Falls, NJ panhandle of Florida a little It has been a great Sep 13 Seth’s Stride Stacy Horne Canton, OH [email protected] over two years ago . The experience working with Annie, their program Sep 14 Michigan Picnic Coreen Abston closest care we can find for Noon-3P Hosted by University of Michigan [email protected] Jay is in Gainesville, three director . Any time I have Mott Children’s Hospital questions or concerns, Montibeller Park hundred miles away . It has Pittsfield Charter Twp., MI Annie is there to ease my been financially difficult to Sep 20 10th Annual Friends of Jeremy [email protected] mind . It has been such a get Jay to his specialists in Golf Tournament www.friendsofjeremy.com relief to know that we have Corning Golf Club Gainesville several times a Corning, NY a group of people that we month . Currently, we are can turn to . Sep 28 Acceptance in the Park Deena Dyson seeing a plastic surgeon, Vasona Park [email protected] CCA has made it possible Los Gatos, CA a speech pathologist, an for Jay to do all things a Oct 12 7th Annual Chocolate Festival [email protected] orthodontist and an ENT . seven-year-old little boy for CCA Our social worker through Aventura Mall should be doing . By seeing Aventura, FL our cleft team introduced his doctors on time and Dec 6 CCA Holiday Party–Midwest [email protected] us to CCA . receiving the care that he 11:30A-2:30P Brat Stop/Parkway Chateau 214.570.9099 Kenosha, WI 800.535.3643 CCA has been an needs, Jay is able to go to enormous help to our Dec 13 CCA Holiday Party–Dallas [email protected] school and be an all-star on 10A-Noon Southfork Ranch 214.570.9099 family, reimbursing us for his baseball team . I cannot Parker, TX 800.535.3643 fuel and meals as well as ever thank CCA enough for 2015 covering our hotel stays all they have done to help Jun 25-28 25th Annual Cher’s [email protected] while we traveled to and Family Retreat 214.570.9099 our family . Newport Beach Marriott 800.535.3643 from Gainesville . They have Brittany Postelwait Newport Beach, California 12 ” a living legacy

e wish we could thank those wwho thought ahead, arranging planned giving according to their wishes—many times without even telling us—all those who made the decision to champion CCA by leaving our charity in their will . ucf: awareness for For this reason, we initiated the CCA Legacy Society, for those who wish to name Children’s Craniofacial Association social change as a beneficiary . Through this effort, we will chronicle CA sibling Anne Moore information about those who care for our future and the cheld an awareness future wellbeing of our CCA kids . fundraiser for CCA at If you wish to fill out a declaration form and become a University of Central Florida . legacy member, please contact us . If you have already set Anne told us, “This year I am up a bequest in CCA’s name, please allow us to include your in the lead scholar program, intentions in our records, describing your gift of security for and this semester we had to the future of Children’s Craniofacial Association . plan and carry out a social change project . My group decided to throw a CCA fundraiser!” Anne and her group raised about $50 in GO PAPERLESS and view the newsletter online in donations from fellow students . Group members Lauren FULL COLOR! Email [email protected] and let her Polson, Anna Ly and Rachel Welborn also placed CCA know you want to save the environment and save collection cans in the community to help raise more funds . money for CCA . Anne‘s sister, CCA kid Katie Moore, was guest speaker, helping spread awareness and understanding of facial differences . Thank you, all!

OP4G (Opinions for Good) elp Children’s Craniofacial Association by becoming children’s ha member of Op4G (Opinions for Good) and taking online surveys in your spare time . Op4G is a different craniofacial type of market research firm . They’re based on a private association membership community of nonprofit supporters who anonymously participate in market research activities . They · Free pick-up pay in cash, and a minimum of 25% (with the ability to · Tax receipt given be up to 100%) of your earnings goes to the nonprofit · Easy & convenient of your choice . Op4G has 340 nonprofit partners, and in 2012 gave over $210,000 to their panel members, like you, for their insights . In return, their members have donated over $79,000 of those funds to their Non-Profit Partners, like CCA . Give your opinions and help out Children’s 877.570.4222 Craniofacial Association! Go to www .op4g .com to sign up and get started today! 13 See accompanying donors from morgan meck’s match play article on page 5. Auction Donors Jim Trueman Blair and Shelley Schrum Laguna Cliffs Resort and Spa Todd Ricker Lexington Insurance 2014 FAMILY FUNDRAISER Four Seasons Resort Scottsdale Maria Amelio John Carr / CSI Insurance GOAL THERMOMETER at Troon North Darin Dankelson Jenelle Harmon and Ryan Vallone Surf & Sand Resort – Laguna Beach Chon Kantikovit Partner Re $275,000 Hilton La Jolla Torrey Pines Chris Campbell PraxAir 100% Four Seasons San Francisco Blair Schrum Andrew Bustillo The Inn at Rancho Santa Fe James Oh Jeff and Tatiane Patty 90% Marriott San Diego Gas Lamp Quarter Steven King Robert Reader 80% Steven and Susan King’s Ontario Resort Kent Penwell Michael Sprague and Shelly Soenen Hanna’s Restaurant Wine Pairing for 6 John Capizzi Deutsche Bank 70% Ian Leisegang Urban and Kim Koegedal Coto de Caza Golf and Racquet Club 60% Aliso Viejo Country Club Matt Nicholas Chris Walker Mission Hills Country Club Russel Newman Jonathan and Helen Cressy 50% Graham Doran Kristine and Greg Williams Desert Falls Country Club 40% Shadowridge Country Club Russell Watts Dan and Cathy Field La Costa Resort and Spa Heath Fisher Rick and Michelle Dousman 30% Mike Dandini – Red Sox Tickets Ben Briscoe Tom Reitan 20% TaylorMade Golf Michael Sprague Ryan Bonnell Bubba Watson PGA Professional Brandon Patty Kathleen and Dale Philippi 10% Ben Briscoe – PGA Professional Doug Tabbert Jeoff and Betsy Robinson Bacarra Resort and Spa Gabe Munoz Deborah Mecklenburg Hanna’s Restaurant and Bar Mike Del Giorgio Greg and Theresa DeVille Brad Walsh – Los Angeles Country Club Michael Bluzer Ray Scotto The Los Angeles Angels Michael Beasley Brendan Arnott Disneyland Resorts Janet White Alan Driscoll Pat Burke – PGA Professional Eric Miller Janet White Randy and Meko Price Randy and Meko Price Participants Volunteers Sponsors and Donors Deb Griffith Jeff Patty Tatiana Lotufo Brad Walsh Bill Mecklenburg and Christine Condino To see CCA’s list of Mecklenburg Ally Georgagi donors as of June 30, Tate Gorman Paige Scott Robert Reader SES Insurance Brokerage Services, Inc. 2014, please go to EverGuard Insurance Services, Inc. Debbie Mecklenburg Robert Kacer Betsy Robinson our website. The list Greg Bonnell Kevin and Jennifer Trapani Maria Amelio Kathleen Philippi can be found at Mike LaBriola Susan King Todd Busser Zurich Greg and Donna Bonnell Reagan Cotter www.ccakids.org/ Jim Noel Shelley Soenen donor-list.html

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BUY A CRANIOFACIAL ACCEPTANCE MONTH T-SHIRT! GO TO WWW.PROMOTES.ME/CCA

Youth S, M, L – $15 • Women’s S, M, L, XL – $20 Men’s S, M, L, XL – $20 • 2XL – $22 Buy and/or sell “Beyond the FREE SHIPPING ON T-SHIRTS! Face is a Heart” wristbands for Craniofacial Acceptance Month 14 matching gifts hildren’s Craniofacial Association (CCA) provides csupport for patients and their families affected by facial differences resulting at birth, later in development, or from accident or disease . Support is provided through our programs and services at no charge so we rely heavily on your gifts to do this . We encourage you to consider maximizing the impact of your donations through your company’s Matching Gifts program . Please contact your Human Resources department to see if your company will match your donations to double your contributions for CCA!

financial assistance

o you travel to receive quality medical care? dIf you do, and need financial help, CCA has a ­financial assistance program that will help with food, Join us on September 12, 2014 at Bear Creek Golf Club in Dallas, TX travel and/or lodging . Call CCA for an application at for the 7th Annual Links of Love Golf. 800.535.3643 . All we ask is that you apply at least Tournament Don’t miss the fun! four to six weeks prior to your next appointment . Register now at www.ccalinksoflove.com NOW SELLING YEAR ‘ROUND sponsors needed for cher’s family retreat!

n surveys CCA families have expressed to us that our iretreat is the most important program we offer . Did you know it costs Children’s Craniofacial Association approximately $100,000 to hold our Annual Family Retreat each June?! From time to time we’ve had T-shirt sponsors . But, we are in need of more sponsors . If you know of anyone who might be interested in supporting this worthwhile program, please have them contact our office . Email “I read Wonder!” T-Shirt [email protected] or call 800 .535 .3643 . Stock sizes: Youth M-XL $15, Adult S-XL Ladies S-XL $20 FREE SHIPPING ON T-SHIRTS! Special Quantities / Sizes / Prices available upon request 15 sarah, from page 1 Sarah was born via last- and all we were given was The only findings were that two, Ben and I truly loved minute cesarean, and from a small Internet printout she tested positive for the Sarah long before we ever the moment I heard the from a common medical FGFR2 genetic mutation that met her, so no amount of on-call pediatrician frankly website that included two defines Apert, and that her genetic testing would have ask me, “Do you have any informational paragraphs, bi-coronal cranial plates had changed our minds about genetic disorders in your both of which were been fused . her . family?” my world was unpromising and fairly When I met Dr. Annan, After Sarah’s birth, forever altered . We saw fatalistic . the on-call obstetrician who however, I ruminated her pronounced forehead, As we held her in our delivered Sarah, for my over that decision and the her mitten hands and her arms for the first time, we post-partum checkup, I was possibility that we could webbed toes, and our hearts had no way of knowing caught completely off-guard have had some answers sank; it was a composite whether she would live or by what she said to me . beforehand; what if we of emotions we neither die, or what quality of life “Jeannie,” she began were able to receive a anticipated nor desired, she would have . We were with no trace of trepidation diagnosis prenatally? Would and yet our hearts were completely in the dark, and and yet with a great dose we have had time to prepare filled with a plethora of yet thrust into this world of amazement, “what ourselves, do some research, agonizing questions about we did not seek—a world happened the day we educate and advocate? As her prognosis . None of the we were forced to accept delivered your baby was a planner, my comfort zone medical staff was certain and even embrace . So we truly a miracle .” She said is to prepare for everything, as to how to diagnose chose to simply love her . All the word miracle with yet Sarah’s birth was a Sarah initially, but within 24 else seemed so peripheral, emphasis, and I was taken stark confrontation of the hours, we learned that they as if researching potential aback as I listened further . reality that not everything suspected she had Apert problems associated with She continued, “I’ve been in life can be planned or syndrome . Apert syndrome would practicing in obstetrics for understood . Ben and I had never before only keep her caged into many years, and I actually heard of Apert syndrome, a societal box labeled transferred here from New “Different .” We had to York not long ago . I’ve seen somehow process that all sorts of things happen unique place in which we in much larger hospitals, were proactive about her but I will never forget the medical care and socio- day I delivered your baby . emotional development The cesarean happened without it becoming a flawlessly, as if in a textbook, crutch or hindrance to her which was significant in being treated, simply and and of itself . But when foremost, as a human being . my hand reached in your Sarah underwent the womb to deliver Sarah, I typical diagnostic testing, felt this power overcome such as a renal ultrasound, me, and it was as if God echocardiogram, vision and Himself delivered your baby hearing screening, CT scans instead of me . I felt His and X-rays, and placement presence in that room that on an apnea monitor . day; it was overwhelming, Remarkably, all of her body’s and the entire medical staff functioning was normal . recognized this supernatural 16 Sarah has unknowingly given me permission to be my quirky self, all because I witness the love and simple joy radiating from Sarah . Quite possibly, this is the most astounding revelation of all: that miracles happen every day, not necessarily in extraordinary or dramatic healings, but rather in the quiet joy and simple beauty found in the heart of a child .

light . I truly believe Sarah is a in light of the beauty of her special child of God .” differences . Her differences, How can one respond I was certain, were gifts after being told something rather than burdens, and I like this, especially when this left the medical office that little was the second encounter day considering the words of person I had with Dr . Annan in Scripture, “I am fearfully and who was my entire life? I did not wonderfully made” (Psalm molded and know her as a person, 139:14) . fashioned differently than and she barely knew me, Today Sarah has just Jeannie Ewing’s Blog: we were . Her differences but she spoke boldly and passed her first birthday, and It’s Love Alone Creates, have taught us that each confidently, without a as I reflected over the past lovealonecreates.com and every one of us is break in her spoken stride, year, I realized how much unique in some way, and oddly, I believed her . she has inadvertently taught and it is precisely our I believed every word she me about life . For one, uniqueness that colors spoke, and my heart was she is not yet old enough the world with what we elevated from a place of to acknowledge that she have to offer. Ultimately, exhaustion, despondency, is different, so the pure this life is not about and fear to a realm of hope innocence about her elicits a blending and fitting and joy . It was then that I joyful proclamation, “Hello in; rather, it is about no longer viewed Sarah’s world! Here I am!” Ben and standing out and owning medical needs as being I know that Sarah is simply what makes us special, cumbersome, but instead Sarah, not a diagnosis, not a gifted and valuable. I saw this fresh human life medical anomaly, but just a 17 sadie’s night at the ball park

resident and CCA kid, John Family, Gorman Gorman; each threw a first Family, Tucker pitch at the game to start Family, LHHS the festivities . Baseball Team Funds were raised and Phillip Tilger through concession and his wife, purchases, bracelet Robyn, and to and necklace sales everyone who (handmade by Coach volunteered, hank you to everyone Tucker’s wife, Ginny with participated twho came out to the help from John’s mom, and donated! Lake Highlands vs Pearce, April Gorman), passing Thank you also high school baseball collection buckets and this Lake Highlands game on March 28th in year, Phillip Tilger Real Community for Lake Highlands, Texas, for Estate Group donated embracing our “Sadie’s Night at the Ball and sold event T-shirts . As CCA kids! Park ”. CCA mom Debbie Bono For the third year in a said, “It was a row, Lake Highlands High magical night School Wildcat baseball for Sadie, John team, led by Coach Cory and CCA!” Tucker, held a night Funds raised to raise funds for CCA, topped last promoting awareness and year with over honoring event namesake, $2,500 for Sadie Bono . Sadie was CCA kids! on hand along with her Thanks goes fellow Lake Highlands to the Bono 18 september is craniofacial acceptance month

his year marks the tenth year CCA will observe t September as Craniofacial Acceptance Month across the nation . Each year CCA families, friends, volunteers and related support groups band together to widen the circle stormbringer for stephanie of acceptance for individuals with facial differences . The goal is to create awareness of craniofacial differences and tephanie Sumpter was born with Goldenhar to get people to see that “beyond the face is a heart .” ssyndrome and was active with CCA as a child . Sadly, As part of the 10th Annual Craniofacial Acceptance Month, CCA will hold its 7th Annual National Picnic she was overcome by the H1N1 flu virus and passed away Day on September 13th (or other date in September in January . Her friends and family (mom, Twyla; dad, of your choice) . CCA families across the nation will hold Chuck; and brother, Chad) chose to honor her by raising picnics giving them a chance to get together with other money for others with craniofacial conditions . Dale 1891 families in their areas, while promoting awareness in their and pub owner, Scott Edelman, hosted the fundraiser communities . held April 13th in memory of Stephanie, donating all food If you would like to hold a picnic, contact CCA and beverage proceeds toward the effort . Program Director Annie Reeves. CCA will invite all of Members of Stephanie’s favorite band, Stormbringer, the families in your area and help you organize your John Vasalakis, Rick Moon, Dana Newcomer, Eddie picnic. Pecchio and John Zahner as well as sound tech, Robby In addition to raising awareness and acceptance, CCA is Vassalo and band photographer, John Fazii, donated raising funds to support programs and services available to all individuals with facial differences and their families . their time and talent to the event . Stephanie’s friend, Contact CCA Development Director, Jill Patterson for Donna Montagnino (aka “Pittsburgh Donna”) initiated materials about this year’s fundraising efforts . the idea of the memorial funder and helped pull it We hope you will join this important effort! Please call together . Thanks all! 800 .535 .3643 .

state assistance: id you know that many states offer funding/ Don’t forget to TURN small grants to individuals with disabilities FACEBOOK YELLOW d during the month of and their family members to attend advocacy, September by using learning events and conferences? The CCA a CCA Craniofacial Retreat qualifies because of our educational Acceptance Month symposium . If you would like more information avitar, downloadable from our website at regarding your state assistance program, please visit ccakids.org/acceptance- ccakids.org/state-funding.html month.html 19 chance raffle / quilt raffle

nce again for this year’s Annual Family Retreat, our ofamilies outdid themselves, bringing baskets and goodies from their hometowns and states to raffle to one another . Also again this year, Mrs. Janie Thurmond graciously donated her time, talent and treasure toward two fabulous quilts for raffle, one large queen-sized and another smaller, lap-sized . Total sales of tickets on both raffles set a new high reaching over$3,000 … about $800 more than last year’s tally . Winning the large quilt AGAIN this year was Cheryl Smith of Mustang, Oklahoma . (Apparently, your odds of winning DO go up when you buy more tickets!) And, the winner of the small quilt was the Gonzales family of Bloomfield, New Mexico . Executive Director, Charlene Smith drew the winning tickets . Thanks again to all who participated in both raffles by bringing items to raffle, buying tickets, and helping with the raffle in any way! See you all in Newport Beach, California in June, 2015!

qgd miniature quilt auction

happy birthday round 110 miniature the quilts as well . The cher! aquilts at the 21st event raised both funds Annual Miniature Quilt and awareness of our her Crew fans and others donated to one of Cher’s Auction were auctioned to cause, and net proceeds of favorite causes in honor of her birthday, May 20 . Cher benefit CCA . This special $7,220.85 were presented c Crew‘s Jill Emerson and CCA‘s Jill (Gorecki) Patterson event was held at Dallas by check to CCA . got together to tell our honorary chair the sweet birthday Market Hall during the Thanks to the auction surprise—more than $1,500 was raised for CCA! Thank 33rd Annual Quilter’s committee, Bonnie you, all! Guild of Dallas Quilt McElearney, Mary Lord, Show in March . Donna King and Glynnis CCA was proud to be the Wood and especially to all Click on chosen 2014 beneficiary, the artistic quilters, who and we helped spread donated their fabulous the word ahead of time “minis” to benefit CCA Donate to garner online bids for kids . Thank you all! at ccakids.org 20 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 21 craniofacial differences experience and how to be more empathetic and kind to others . The culminating event occurred on February good news 10, 2014, when the author Caraway Elementary Round Rock ISD visited our district and School Librarians spoke to 2,500 students by Julie Cooper by Carlyn Gray about her writing and the After a district-wide An initiative was planned book, Wonder and spoke reading of the book, around the promotion of later in the evening to the Lawton C. Johnson Wonder, by R.J.Palacio, reading the book Wonder, public with about 500 Summit Middle School Caraway Elementary by R.J. Palacio . Our more from the community district librarians planned The students and school in Austin, Texas in attendance . Students, and implemented many faculty at Lawton C . held a fun run to raise teachers, librarians and activities to encourage Johnson Summit Middle funds to donate to CCA . administration of the students to read the School in Summit, New Each donated any sum Round Rock Independent book, to provide writing Jersey, raised more than they chose and did laps School District in Texas, opportunities, and to $4,000 via their annual around the track . It was presented Children’s increase our students’ Craniofacial Association “Hoops for Humanity” a fun-filled event and we understanding of the with a check for $6,608.98 . basketball game . Children’s are pleased to contribute struggles that children with Thank you! Craniofacial Association $207 to support Children’s was chosen as beneficiary Craniofacial Association . after the students read Thank you for all you Medford Memorial Middle School Wonder . CCA “Wonder” do . Thank YOU Caraway kid, Trevor Larys and his Elementary students and parents, represented CCA staff! at a school assembly check presentation . Thank you Seaford ALL! Elementary Seaford Elementary Cedar Valley Middle school of Seaford, Virginia School also held a Wonder project Cedar Valley Middle fundraiser and sent in a school in Round Rock, donation of over $600! Texas, sent CCA a check Thanks to coordinator, for $220.65, proceeds Kimberly Stratton and all from their cocoa and donut who participated! After 8th graders read Wonder in the fall, we celebrated sale . The effort was held our 2nd annual “Choose Kind” day on December 13th . because they took CCA’s Holly Academy Upon return from winter break, the 8th grade began Choose Kind challenge Holly Academy in to work on their goal of raising $2,100 in order to send to read, Wonder, take Holly, Michigan held a a local family to the CCA Retreat in June . They sold the Choose Kind pledge Jean’s Day fundraiser and “Wondergrams” during lunchtime . Additional donations and support the cause! raised almost $400 for were gathered through change jars set up at various Thanks so much, everyone CCA, after a visit from locations in the school, a schoolwide pajama fundraiser, a involved! CCA Wonderkid, Peter Wonder-inspired scarf fundraiser and through a generous Dankelson and mom, donation by Student Council following their annual charity Dede! Thank you! basketball tournament . Thank you Medford Memorial! 22 Nehaunsey Middle School by Cathy A. Tortella, RN On Friday, June 6th, we held our 2nd annual “One Book, One School” event at Nehaunsey Middle School . Every student and school staff member received and read, Wonder . The day’s activities included a presentation from the Children’s Hospital of Philadelphia’s Division of Plastic and Reconstructive Surgery, several of their patients and parents, and of course, Lentil! Other events included team-building activities on trying a difference, writing Wonder-Grams, a quiz show game on the book’s Dolsen Elementary content and much more . It was an exciting day and we are by Laura Weakland happy to contribute $210 in donations from some of our Our Dolsen Elementary Helping Hands Club is proudly students’ parents . Thank you Nehaunsey Middle School, displaying a very large check of what they raised with students, staff and parents! our bookmark sales! The students raised $175 through bookmark sales and then our PTO matched their efforts for a $350 donation to Children’s Craniofacial Association . Such a positive experience for my students to be involved in! CCA Kids say thank you one and all!

zumbathon for cca and making sure it was successful . She says it wouldn’t have been he first-annualChase’s place at the Richmond in all—that were presented possible without you! Quest Zumbathon Raceway Complex at the throughout the event . t This inaugural Chase’s was held Sunday, May Old Dominion Building . A huge thanks to all Quest Zumbathon grossed 4, 2014, in Richmond, There were 20 plus Zumba who sent donations, $3,400 for CCA Kids! Virginia . Hosted by CCA instructors who led participated in the event Thanks again, everyone! Mom Carrie Ingram and participants for four hours and volunteered to help named for her son, Chase of Latin American dance make this event Ingram, the event took moves performed to mostly a success! Carrie Latin American dance especially wishes to music . Seventeen vendors thank two awesome came out to support ladies, Donna Chase’s Quest, each giving Carver-Bolan and a gift (or gifts) for a door Carol McDonald prize drawing—30 prizes for helping put the event together 23 children’s craniofacial association 13140 Coit Road, Suite 517 • Dallas, TX 75240

Honorary Chairperson: Cher

Board of Directors: Bill Mecklenburg, Chair, Mission Viejo, CA George Dale, Corning, NY Dede Dankelson, Highland, MI Tate Gorman, JD, Dallas, TX Paula Guzzo, Evansville, IN Margaret Lavender, Norman, OK Janis Macut, Harrisburg, PA Erica Mossholder, Pensacola, FLO

CCA Network Editor: Kelly Liszt, copybykelly.com

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

Executive Director: Charlene Smith

Program Director: Annie Reeves

Development Director: Jill Patterson

voice 214.570.9099 fax 214.570.8811 toll-free 800.535.3643 url CCAkids.org

The views and opinions expressed in this newsletter are not necessarily those of CCA .

If you no longer wish to receive this rick’s raffle 2014 newsletter, please send an email to AReeves@ccakids com. or mail the label he drawing for our 4th annual raffle, held in memory ofRick Dornier, was held on Rick’s to the CCA office and ask that birthday, April 25 . Pat Arrington, who had 30 tickets in the raffle, was the winner . Pat it be removed from the mailing list . t If you know of someone who generously donated the deluxe Thomas Wooden Railway “Grow with Me” play table and would like to be placed on the “Happy Birthday” Thomas engine back to CCA to raffle again at our Annual Family Retreat, ­mailing list please ­forward to us saying “It sounds like a great idea; a fun money-maker that will still mean that this wonderful their name and address . toy will go to a CCA child .” The raffle brought in$1,180 prior to the retreat . Thank you to all who participated! The lucky winner at the retreat was Jesse Bridgins . Congratulations to Jesse, one very happy boy! 24