ccanewsletter of the children’s craniofacialnetw association Cher — honoraryork chairperson summer 2008 inside ryan and caroline’s cca kid story rick dornier ...... 2 By Elizabeth Dale cca adult tamara mantlo...... 3 cca supersibs julia & luke dornier ...... 4 craniofacial acceptance month ...... 5 cca retreat...... 6-7,13 message heroes for hope gala . . . . . 8 from the Above: Caroline Dale paul tessier ...... 9 Left: Ryan Holliday program insurance coding...... 12 director calendar of events...... 14 K, let me take a poll. hen you have a child how to raise funds . . 14-15 oWho wishes they born with a very rare w were still in Myrtle Beach, fundraising news...... 16 craniofacial disorder, the last thing you expect is to meet playing in the sand and someone “right around the corner” with the same good news ...... 17 ocean? If you’re like me, situation. So ’s surprising we came to know the Holliday donors ...... 18-19 I’m sure most of you are family, yet we’re thankful we continue to enjoy their raising your hands at this 3 cheers ...... 20 friendship. This story is about Ryan Holliday and very moment. Caroline Dale: two sweethearts with Pfeiffer Syndrome I can’t believe it’s already who were born just one month apart and who live “right over. Time sure does fly around the corner” from one another. when you are having fun! Like many families, we had no idea there was anything Speaking of fun, I hope all wrong until our children were born. Ryan Holliday was of you enjoyed the retreat born on February 7, 2006, and was diagnosed with and were able to make We wish to thank Bally’s, Pfeiffer syndrome when he was three days old. After nine new friends and reconnect a corporate sponsor, for helping days in the NICU, his parents took their beautiful baby boy with old friends. to fund the CCANetwork. home and began the journey of learning all they could This was our largest about this rare craniofacial syndrome. Ryan lives with his retreat to date, and we dad David, mom Michelle and big sister Kathryn in Flower Please consider a corporate had families join us from sponsorship. Contact Jill Mound, TX. Gorecki, [email protected] see ryan & caroline, page 10 see program director, page 9 empowering and giving hope to individuals and families affected by facial differences ccakid meet rick dornier

nyone who knows with his eye?” people will his arms. He also loves Rick has had five aRick Dornier knows ask, and Julia and Luke are music and enjoys dancing operations with more to he’s a truly amazing little quick to tell them, “That’s and singing. follow. He had meningitis boy. This little two-year-old how God made him. That’s And he has a fascination last year and had to have from Baton Rouge, how he is. But that’s OK. with elevators. This is fluid drained from his brain. Louisiana, is such a happy The doctor will give him a probably because of all the This was life-threatening for kid, always laughing and new one.” elevators he has ridden little Rick. He had to stay in smiling. His family considers Rick also attends a play when in the hospital and ICU for 11 days. But he’s a him a total blessing, and it’s group with friends his age. doctors’ offices. He loves really tough kid, bouncing easy to see why. Everyone plays together riding them and even has a right back after this illness His sister, Julia, and wonderfully. They often go “pretend” elevator at as well as each of his brother, Luke, absolutely to the park, his friends' home. Rick and his family surgeries. Right now, his adore Rick, and Rick feels houses and to local kids' went to the beach this past health is pretty good. It’s the same way about them. indoor play places. summer. Sure, he loved been a “normal” summer Rick and Luke are such Rick loves to eat graham playing in the sand, but he so far. good friends, always crackers and could drink was particularly enthralled Rick’s cognitive abilities playing together, swinging milk “all day long.” And, with, you guessed it, the are excellent. In fact, his and even inventing their like most kids, he’s a big fan hotel elevator! communications skills are own games. “What’s wrong of chocolate cake and When he was born, Rick well above average — Rick chocolate ice cream. had too much fluid in his has been speaking in One of his favorite shows brain. (This was detected complete sentences since to watch is Baby Einstein’s during ultrasounds before he was a year old. Walking “Baby Dolittle.” He’s really he was born.) He had other took a while though, into the elephants in the complications, including a because of all his surgeries show and can be seen cleft palate and two holes and their subsequent doing elephant impressions in his heart. His left nostril recovery periods. However, on occasion, showing off was very small, and he had he’s made up for lost time the “trunk” he makes with no left nasal airway. He was and is walking and running also born without a left eye. quite nicely.

2 meet tamara mantlo Living with Carpenter’s Syndrome: One woman’s story.

hen I awoke April I also had reconstructive and had my pulmonary wanted to bring a few of w17, 2008, it was like knee surgery with the valve replaced with a the little kids home with a dream had come true. chance of never walking porcine (pig) tissue valve her. (Somehow I didn’t That’s because I never again. (Well, that didn’t and a defibulator. I had my think their moms would’ve thought I’d live to see my happen.) I am also fighting heart shocked three times liked that.) 40th birthday. When I was a constant battle with and almost died. And I was For now, I’m getting my three, doctors told my obesity. upset because I couldn’t go bachelor’s degree online. I parents I may not live to be In 1993, one of the best to Hershey to have would then like to get my 10. But here I am, defying and scariest things in my chocolate. teaching certificate to the odds. life happened to me — I The next summer, Sarah teach special education I was born with became pregnant. I and I drove to Salt Lake because I feel I have a lot Carpenter’s syndrome and remember praying every City for the CCA retreat, to offer. a congenital heart defect. I day for nine months, where I finally got to meet I’d also like to establish a had an open-heart surgery “Please let my child be all the awesome people I’d nonprofit organization to at age three to fix a healthy.” On March 20th, been talking to over the honor my sister, Wendy, ventricular septal defect, a 1994, my beautiful, healthy last few years on the Apert who died when she was hole in my heart. After that daughter, Sarah, was born. Listserve. just an hour old from surgery, the list goes on Now she’s a healthy This was the best complications of with removing extra fingers teenager, which is a little experience in my life — I Carpenter’s syndrome. and toes from both hands difficult for me because I’m actually felt “normal.” All Until then, I’ll keep and feet and separating not used to all the things my life I was always the advocating for people with fingers on my hands. (The healthy teenagers do. I different one, but oh no differences and congenital first three toes on both have tried my best to raise not here. I was just like heart defects. feet are still webbed.) her to accept people for everyone else. I stayed up So, yes, here I am, all 40 I’ve had tubes in my ears who they are and to see all hours hanging out with years of me, still defying a few times and eye beyond outside differences. new friends. I talked sports the odds. But I wouldn’t surgery. Luckily, I didn’t My first CCA retreat was with kids in the pool. I was have been able to live this have to have any cranial supposed to be in Hershey, finally able to just be dream without the love, surgeries. The only type of but the Monday before we myself around people who strength and support of my head surgery I’ve had dealt were supposed to leave my actually could say “I know parents. They would with a chiari malformation, heart went into ventricular how you feel” — and probably tell you I’m one and that was performed tachycardia. I was in the really mean they know stubborn woman. I’d say, when I was an adult. hospital for three weeks how you feel. Sarah “Thank you, yes I am.” ccaadult 3 meet julia and luke dornier

Julia is eight years old bottle feed. It then took Julia also loves to read, also likes Spiderman, jand will be starting third me another 30 minutes to dance, play soccer and Transformers, , The grade this fall. She’s a pump breast milk for the football, swim, ride her Incredible , Power very caring, smart and fun- next feeding. That is what I bike, rollerblade and listen Rangers — basically any loving child who adores did all day and night. to music. She has also superhero. her little brother, Rick. Julia became a little been in Girl Scouts for the We have nicknamed him Julia was six years old mother. She did this last three years. “The Puzzler” because he when Rick was born. selflessly and without us Luke is four years old and has a knack for doing Immediately, she took on ever asking her to help. will be starting pre-k soon. puzzles. He can put the role of caregiver for She continues to be a Luke turned two shortly together 100 piece puzzles herself and her other tremendous help with her before Rick was born. He without any help. This brother, Luke, who was two little brothers. But we didn’t understand why summer, Luke was very just over two at the time. try to let her be more of a Mommy and Daddy were proud that he learned to Every morning Julia would child and not as much of a at the hospital for so long swim all by himself! Rick make breakfast for herself caregiver now. or why Rick couldn’t come even learned how to move and Luke. She would Julia loves to draw and home. Luke was crazy his arms and legs in the ensure that they were paint and is a wonderful about his baby brother water from watching Luke. dressed and ready to start artist. When she was six right from the start. To this Luke and Rick are great the day. Julia would years old, her drawing of a day he is still constantly friends. Rick likes to try to entertain Luke by reading tiger was published in hugging and kissing Rick. do everything that Luke to him and playing with Highlights magazine. Last When Luke meets does. They like to play hide him. year, she won the someone for the first time and seek, swing on the She also liked to help me Principal’s Choice Award he is shy and reserved. But swing set together and take care of Rick. I truly for second grade at her when he gets to know you, play with their toys. They could not have gotten school art show. Julia is you better watch out! He is also like to make up their along without her when constantly drawing pictures all boy! Luke is very own games such as “spit” Rick was a baby. Rick was for Luke and Rick. Her rambunctious and loud (again, much to Julia’s not able to breastfeed drawings hang proudly all (much to Julia’s dismay). dismay). Luke can’t wait because of his cleft palate. over their bedroom walls. Luke loves to play Star until Rick is old enough to It took him 45 minutes to Wars with his friends. He do more things with him. ccasupersibs 4 craniofacial acceptance month Beyond the Face is a Heart

his year marks the New in 2008, as part of It’s not too late. If you’d t fourth year CCA will the fourth Annual like to hold a picnic, observe September as Craniofacial Acceptance contact CCA program Craniofacial Acceptance Month, CCA will hold director Annie Reeves. CCA Month across the nation. National Picnic Day on will invite all of the families CCA families, friends, September 13 (or other in your area and help you volunteers and related date in September of your organize the event. development director Jill support groups will be choice). CCA families In addition to raising Gorecki for materials about widening the circle of across the nation will hold awareness and acceptance, this year’s fundraising acceptance for individuals picnics, giving them a CCA is raising funds to events. with facial differences. The chance to get together support programs and Please call 800-535-3643 goal is to create awareness with other families in their services available to all to find out how you can that beyond the face is a areas while promoting individuals with facial join this important effort! heart and the true person awareness in the differences and their within. communities. families. Contact CCA donors in the spotlight cca mugshots

Left to Right: Annie Reeves, Char Smith, Mary Zimmerman, Elizabeth Moulton John Moulton and Jill Gorecki

CA would like to nonetheless. The family has membership as well as crecognize John been among our from others. Moulton and his family, “regulars” for many years At this year’s family including his mother now. retreat in Myrtle Beach, Elizabeth, sister Mary Although she can no Mary and John presented Zimmerman and nephew longer attend, Elizabeth CCA with checks, including Steven. still supports this event and a generous gift from St. Elizabeth found CCA CCA with her financial gift. Aspinquid Lodge, through when her son, who was Mary Zimmerman, John’s Mary’s son, Steven. born with Apert syndrome, sister, continually seeks Here is a family whose was already grown, but she donations for CCA from influence moves others to understood the value in her own social group help our cause, and we attending our retreats sincerely thank you! 5 a retreat weekend full of love and laughter By Kathie and Hannah Steinagel

Instead of the usual write-up, the folks at CCA would like to give you a family’s perspective of the retreat. Here’s a letter from Kathie and Hannah Steinagel. They attended their first retreat this year in Myrtle Beach.

y name is Kathie When she was finally free number, and within a day mSteinagel, and I’m to go home, she struggled Annie Reeves called me new to the CCA family. My with what the “new ear” back. Annie informed us of daughter, Hannah, is eight would look like, as she was the annual retreat that was years old, and she was so in love with her baby ear. just a few months away born with hemifacial micro- The bandages accidentally and invited us to come. somia and microtia. came off while she was My husband and I were I have always felt that playing at a friends’ house, so unsure of whether or Hannah was perfect. For and when the other girls not we could afford the the most part, she has had her age saw her ear, they trip, and we went back positive experiences reacted negatively. Hannah and forth trying to decide sharing her story with was devastated. Luckily I if the benefit of the retreat other people and helping was there, and she came to would offset the cost. those around her me and cried and we talked Finally, we decided that the retreat. I could try and understand what a gift it is it out. Hannah really needed this describe the immediate to have such a special ear. From that day forward, group, and we had to find sense of belonging, the That all changed this year, she kept begging me to a way to get her to Myrtle shared sense of love and when she began the multi- help her find a friend like Beach. So, on a wing and a concern for our children, surgery process of getting her, who understood how prayer, Hannah and I flew the highs and lows we all a new ear. hard it is to be a little to South Carolina. face through intense Her first surgery was different from other There really aren’t words medical care, but I can’t more difficult than we people, someone who to describe what we felt seem to find the right expected, and her hospital knew how challenging while we were with the words. I guess we just felt stay was much longer than surgeries and hospital stays CCA kids and families at like we were home. It was we planned. Hannah are, someone who would wonderful. became more and more just love her for her. As a A special note from Hannah was able to sing frustrated with her life, her family, we all love and Hannah at the talent show, and it ear and her challenges. adore Hannah, and it was “It was a neat was so great for her. She so hard to hear experience meeting my has an incredible love of her say that we new friends … and music, and it was so fun weren’t inside each one of them for her to share that with enough. But her new friends. The night is so special … and that request after the talent show, as I when I met my new led us to CCA. was putting her to bed, friends I felt happy and After some she said “Now all of my it was so special to me. I Internet dreams have come true. I research, I think we can all use our met new friends just like found CCA. I gifts to make the world me and I got to sing on called the 800 a better place.” stage!” 6 continued next page  The rest of the retreat, so many of her new friends and their families complimented her on her song. I can’t begin to tell you how that built her self confidence! Thank you for knowing what she needed! My first retreat was incredible, so much so that I told my husband I hope we never miss another one. As we were leaving Saturday night and Hannah said her last goodbyes, I kept thinking of how much I would miss all of the new, million little light bulbs go I wish you could have beautiful faces I met. I off in my mind as she told seen them all together, can't believe how much me how she feels about living, loving, laughing — they mean to me, and now her son, Scott. not at all worried about I get why this really is a So, obviously, I can’t say acceptance or appearance. family. enough about the retreat. I I wish you could read my was a heart and know how much skeptic it means to me that we at first, have a place to go every and now year, where Hannah can let I am a her hair down and just firm enjoy being her without believer having to worry about — these feeling out of place or children different. need The staff is incredible for this doing what they do. I hope retreat! they could feel the love It was and the appreciation from I was grateful for the perfectly perfect! I am so me and so many others moms that I met. I have grateful to the individuals while we were together! always felt very blessed to and organizations that This retreat and this have Hannah, and I think donate time and money to organization is a safe the best part of the retreat make this happen for these haven for Hannah and for for me was finally meeting kids! us, and we simply can’t parents that feel just like I wait for next year! do. I feel that everything about Hannah is a gift. I feel so lucky to be the recipient of this little girl. Paula Guzzo reinforced that with me, and I felt a

see more retreat photos, page 13 7 the jorge posada foundation heroes 4 hope gala

Gala diners CA is proud to have George Steinbrenner’s son, from the cbeen invited to join the Hal who was presented an Redwoods Group table Children’s Hospital at award for his father. for CCA Montefiore and National Foundation for Facial Reconstruction in the Circle of Beneficiaries for the Heroes 4 Hope gala Monday, June 16, in New York City. The event was Laura and Jorge Posada hosted by Jorge and pose all night long with gala attendees, Laura Posada and their including Rob Gorecki. children Jorge, Jr., and Paulina. JR and friends congratulate the Kelly Ripa and her winning bidder for the Johnny Pag husband, Mark Consuelos, Motorcycle, autographed by the emceed throughout the entire NY Yankee’s team. An online auction Rob Gorecki corresponding to the gala meets Kelly Ripa. began a week before and ended a week afterward, but a few of the items were brought to auction during the evening. The highlight of the night was Kris, George and Jeremy Dale with masters of a motorcycle donated Jeremy Dale with ceremony, Mark Consuelos and through CCA by Johnny CCA staff Kelly Ripa Pag Motorcycles and signed by the entire night, and other notable Yankees team that was attendees included many auctioned to a winning of Jorge’s New York bidder for $27,000. Yankees teammates, Rudy We’re extremely grateful Giuliani, Spike Lee, and to all of our friends at the Jorge Posada, Jr., Jorge Posada Foundation hangs with new for this incredible opportu- buddy, Jeremy Dale. nity to raise funds while promoting awareness of craniosynostosis and other craniofacial conditions. Annie, Char, Greg and Jill

CCA loves JR Pagnini, who donated a motorcycle for auction. 8 Pioneering plastic surgeon whose influential work heralded a global revolution in the field Paul Tessier of craniofacial techniques

aul Tessier, died on including severe birth specialities of maxillo-facial pJune 13 aged 90. He anomalies affecting the surgery, neurosurgery, was a highly development of the brain, ophthalmology and plastic influential surgeon who the visual axis, the airway surgery, which he brought originated the field of and dentofacial growth. together into the single craniofacial surgery; this Tessier's techniques and speciality of craniofacial and his caring expertise brought together a number surgical expertise brought surgery. made a vast difference in of other specializations to him many admirers and Many of our CCA kids the lives of those we know allow the treatment of disciples worldwide. His have had consultations and love. many previously influence now pervades with this remarkable man, inaccessible conditions, and unites the surgical program director, from page 1 states. Attendees bought She said words could not 27 of the 50 states, On Friday, we ate raffle tickets and deposited explain how she was Canada, Mexico, New breakfast outside in the them in the bags feeling. Ryan Broomé, a Zealand and Australia! South Carolina sun. corresponding to their second-time retreat There were several first- Afterward, we went to favorite baskets and then attendee stated how seeing time retreat families. For Ripley’s Aquarium and saw anxiously awaited the his daughter interact and many, this was their first everything from sharks and drawing. dance with other kids time to meet another swordfish to turtles and After breakfast Saturday brought tears to his eyes. family with a child who has sand crabs. We all wore morning, everyone headed More tears followed a craniofacial difference. To our CCA Retreat T-shirts, to the beach for some fun Sunday morning as see a child finally meet which was such a neat in the sun — a day full of everyone had to say someone else who “looks experience — CCA T-shirts swimming, laughing and goodbye. like them” is priceless. everywhere you looked! building sandcastles! After We are truly one big, Many of the families Friday night, we held a washing off all of the sand happy family. If you have belong to Internet support talent show, teen night (some had more than never attended a retreat, groups and were able to and our chance raffle. Let others), everyone got you should really consider finally meet the families me just say, our CCA dressed up for our most it. You can read about our with whom they talk families are talented! We popular event — the retreats in the newsletter, online. had kids get up on stage dinner dance. While adults but until you experience Everything started and sing, dance and jump were filling their plates one in person, it is hard to Thursday evening with an rope. We even had a few with food, the kids were understand the benefits. ice cream social and an ice adults sing for us! already out on the dance CCA will be turning 20 breaker. The families were Meanwhile, the teens floor. Families danced the next year, and I hope you separated into 24 groups, enjoyed some time away night away! will help us celebrate our and each group had to from their parents and During the dinner dance, anniversary! Please join us design a surfboard. This danced the night away at first-time attendee for our 19th Annual Family was a great way for the the Teen Night Luau. Rebecca (Carlisle) White Retreat in Grapevine, Texas. families to instantly For the third consecutive came up and gave me a Registration is now open, connect. A hotel employee year, we held a chance big hug. She told me how and you don’t want to miss judged the surfboards, and raffle. Families brought she had literally been this one! soon after, the winner was baskets from their crying since they arrived announced. hometowns, cities and and how much the retreat Annie Reeves meant to her entire family. Program Director 9 ryan and caroline, Caroline but we have another baby Surviving the First Year at one from page 1 coming to our office that is The first year was very year old close in age to Caroline challenging, and while we Caroline Dale was born with Pfeiffer syndrome.” I had many things to be on March 2, 2006, and we agreed to share my phone joyful about, there were were initially told she had number with the other lots of tears along the way. Crouzon syndrome. The family and soon called the At our first meeting in the nurses were huddling over Holliday family to introduce park, we both had no idea her right after she was myself. how much lay ahead of us delivered, so all I could see On our first meeting at a and how our relationships was her beautiful pink examining Caroline nearby park we discussed would become a source of cheeks. It wasn’t long had seen many other our children and all the strength and support. Ryan before I knew something craniofacial children and things we had in common. and Caroline had their first was wrong and Caroline told us to treat her like the Our oldest children were cranial vaults with Dr. was whisked away to the normal baby she is. It was one month apart in age Fearon just two days apart NICU. In the NICU, I at Medical City that we and had been in the same when they were four and noticed that her head was were told Caroline most preschool class together five months old. During misshapen and that her likely had Pfeiffer when they were two years those first six months of eyes looked “puffy,” but syndrome, which is very old. We had the same their lives, we supported otherwise she seemed fine similar to Crouzon. After family physician, went to each other by talking to me. eight days in the NICU, we the same church, lived two about the emotions took sweet Caroline home. miles from each other and involved in going out in our Pfeiffer children were public and adjusting to the both being cared for by Dr. stares and hurtful Jeffrey Fearon at Medical comments. City Dallas. That support helped us When your child is born navigate tougher times: with a rare disorder you surviving what seemed to wonder what is normal for be endless doctor visits, your child. Both children hearing issues, feeding snorted a lot while issues, cranial vaults, drinking their bottles hydrocephalus, chiari mal- because of the tiny nasal formations and tra- canals typical of Pfeiffer. cheostomies. Both Caroline Ryan (above) and Caroline When we first met, it was and Ryan were diagnosed (left) at eight and seven reassuring to hear another with some hearing loss and months old. child sound the same way. both have had BAHA The similarities we saw Divino bone conducting Fortunately, we live in the Caroline lives with dad helped us understand what hearing devices since they Dallas, TX, area, which is Randy, mom Elizabeth and may be more typical for were seven months old. home to a major big brother Brandon in Pfeiffer. Before we left the By age two, Ryan had an craniofacial center, where Highland Village. park, a woman walked by anterior cranial vault, Caroline was moved the and noticed our two tiny shunt, a g-tube and nissen day after she was born. How We Met babies and asked, “Are fundoplication, tracheosto- Although we were still very During one of our visits they twins?” We laughed my and a combination pos- scared, it was a very to the pediatrician, our and said “no,” but it was terior cranial vault and different experience when doctor said, “I’ll probably only the first of many times chiari decompression. we arrived at Medical City. never see another situation we were asked that very Caroline had an anterior Most of the doctors like this in my entire career, same question. cranial vault, g-tube and

10 continued next page  close to walking in the siblings have to deal with typical 11-to-15-month age the staring and hurtful range. The range was comments other children pretty much from 18 to 24 make about their sibling Ryan with his months, so it was whom they love sister, Kathryn reassuring to know that a unconditionally. They also child undergoing many of worry about their brother these surgeries may or sister when they have typically be expected to surgeries. walk somewhere in that It’s hard to imagine how range. strong our children have been, but it amazes me to correction of intestinal mal- only will it help emotionally Two and Beyond see how far they have rotation, tracheostomy and in understanding what to Now we have the joy of come. Now, when Ryan two third Ventriculostomies. expect those first few seeing two children sees Caroline he gives her She also had her second years, but the information developing and growing a hug and signs friend and anterior cranial vault, tear- learned can make a and being pretty much like Caroline happily proclaims duct stints and eye-muscle difference in managing other “normal” two year “Rye’s home.” There were surgery and g-tube closure. your child’s care. The more olds, tantrums and all. times we wondered when, Caroline has had eight information you are armed Since they are walking and if ever, they would walk or laser surgeries on a large with, the better able you out on their own, Ryan talk, and we have been port-wine stain that covers are to discuss concerns and Caroline are noticed fortunate to see those her right thigh and lower with your doctor regarding even more than before by things happen. It’s back, though this is their treatment. other children. We try to reassuring to know that unrelated to her Pfeiffer Eventually our circle help others understand even if our kids don’t do syndrome. widened and we came to why our kids look as they everything at the same Compared with children know other families with do or why they have “that time, they will get there their own age, Ryan and craniofacial children. We thing” in their neck (trach). eventually. Though they Caroline were labeled as met many families seeking We hope that this don’t realize the “developmentally delayed.” treatment in Dallas while at awareness will help them significance yet, it’s They both sat up, started Medical City, as well as to not be afraid or just amazing that Ryan and scooting (not crawling) and those at other centers stare at a Pfeiffer child, Caroline are able to grow eventually walking around across the U.S. in an online which is a common up together. As they get the same time. support group. We had reaction when we’re out. older, we hope that their It’s so important for any asked many of our online Oftentimes, when unique friendship will family going through this friends when their children children learn about the enable them to support experience to have some first walked, since our disorder and some of the one another. We look type of support group. Not children were nowhere surgeries our kids have to forward to many more go through, they begin to happy times ahead, and, as react more positively we write this article, we’re towards Ryan and Caroline. looking forward to a trip financial assistance We educate as many together to Myrtle Beach people as possible in our and meeting other families o you travel to receive quality medical care? community about our at our first CCA Retreat! dIf you do, and need financial help, CCA has a children, particularly within financial assistance program that will help with food, the schools because our travel and/or lodging. Call CCA for an application at older children are also 800-535-3643. All we ask is that you apply at least affected by Pfeiffer four to six weeks prior to your next appointment. syndrome. The older 11 ds Klub Insurance Coding Ki

Hello to all CCA families from Janis and Doug Macut. Here’s what we spoke Kids K lub about at the dinner/dance Saturday night at CCA’s retreat in Myrtle Beach.

e have all, at one As we all know, there appealing claims, and wtime or another, has been an ongoing sending and reviewing had problems with issue with medical records, all of which will NEW! cca’s adequate insurance “services being considered allow for more prompt coverage because of cosmetic in nature versus and efficient quality care Kids Klubs coding confusions. (Is a medically necessary for all. procedure reconstructive or reconstructive ant to stay in touch cosmetic?) I truly got tired procedures. Because of What this means is, once wwith your CCA of all the hassles, the time this, we have seen a the AMA” clarifies all the friends throughout the involved and jumping delay or denial of codings with the proper year? Join one of CCA’s through hoops with services. This problem, modifiers — this is in the Kids Klubs. You’ll talk with insurance companies, so unfortunately, is works now — all doctors, other “kids” your age, we decided to do escalated due to the fact hospitals and insurance make new friends, play something about it. that surgeries are companies in all states will games, and join In August 2007, we met sometimes done years be required to comply. We discussions. Join one of with the Vice Presidents apart by multiple are hopeful this will be in four age group levels: from the Pennsylvania physicians. place by 2010. Kindergarten thru third Medical Society and The Pennsylvania This will save both time grade, fourth and fifth Capital Blue Cross Medical Society and the and hassles for families and grades, sixth thru eighth Insurance Company to American Medical extensive cost to insurance grades, and ninth through discuss coverage problems, Association have joined companies. A huge added twelfth. Each level has age- coding confusions and the together in a grass-roots benefit would be that appropriate activities that use of modifiers. The effort to address this craniofacial conditions are will keep you connected. Pennsylvania Medical issue. They will work recognized as lifelong So join your CCA friends Society was very interested with insurance carriers journeys and need to be now and let the fun begin! in our ideas and contacted across the country to treated as such. Contact Annie Reeves for the American Medical recognize that We feel very passionate a Kids Klub application Association. They, too, procedures associated about this issue and will today! were very receptive to the with specific diagnostic stay very close to the ideas for change and codes for craniofacial process to assure realized such changes were conditions should everything is put into cca webinars necessary. automatically be place. Should any families Before we left to come deemed medically have any questions or want NEW in 2008 to the retreat, I received a necessary and not to offer any input, please SEPTEMBER letter from my contact at cosmetic in nature. This feel free to contact us at Arletha Miller the Pennsylvania Medical will help eliminate the [email protected]. Social Worker Society. excess time, money, and We’ll also keep you posted NOVEMBER resources spent by all through the CCA website. Dr. Rick Redett parties involved in Pediatric Plastic Surgeon denying services,

DATES AND TIMES TO BE ANNOUNCED. 12 more retreat photos, from page 7

13 calendar of events how to raise funds for cca date event contact CCA depends on funds rebate funds. Call us September 13 2nd Annual Seth’s Stride [email protected] for CCA Stacy Swihart cdonated by individuals, at 214-570-9099 or Canton, OH www.firstgiving.com/sethsstride proceeds from family and 800-535-3643 for September 20 Alexa’s Appeal for Craniofacial www.firstgiving.com/ friends’ fundraising efforts, more information. Awareness, Dinner/Auction ccaawarenessdinner corporate giving and • Matching Gifts Center Plaza Modesto, CA foundation grants. The Many companies offer a September 22 Jylian’s Links of Love for [email protected] need is great as we grow matching gift program CCA, Celebrity Golf Event JyliansLinksofLove.com to provide programs and that could double or even White Stone Golf Course 800.535.3643 services to many more triple your gift to CCA! Benbrook , TX affected individuals and Contact your human October 4 4th Annual Friends of Jeremy [email protected] their families. Any help our Golf Tournament www.friendsofjeremy.com resources office to find Country Club of Corning readers contribute is most out if your company has Corning, NY appreciated. Here are some such a program. October 5 Chocolate Festival [email protected] ways to help. • Planned Giving Aventura Mall Aventura, FL Tax preparation time is • www.goodsearch.com also a good time to October 11-18 Disney Cruise 2008 www.apert.org (Powered by Yahoo) consider long-term tax Jun 24, 2009 Craniofacial Symposium [email protected] Great Wolf Lodge www.ccakids.org Enter Children’s savings. When you Grapevine, TX 800.535.3643 Craniofacial Association consult an attorney or Jun 25-28, 2009 19th Annual Family Retreat [email protected] as your beneficiary investment professional Great Wolf Lodge www.ccakids.org charity. (You only have to regarding your wishes for Grapevine, TX 800.535.3643 do this the first time. You distribution of your assets may add others if you in your will, consider a wish.) CCA will receive provision for CCA. Your up to a penny each time planned gift in the form ccaprograms someone uses the of an endowment will live GoodSearch search on after you. and services in the spotlight engine. • CCA Web Store In addition to You can now shop at Families of craniofacial patients often call CCA to seek “searching” for CCA, you CCAKids.org for your emotional support, discuss problems and identify can “goodshop” online T-shirts, mugs, caps and resources. Through our database, we are able to network by clicking thru to more. So shop now and families with support groups and/or others who have GoodShop.com, a new shop often! similar conditions and experiences. We also keep a list online shopping mall • Clubs / Hobbies of helpful resources and are always willing to listen and which features hundreds Have your club organize a offer emotional support to family members who need a shoulder upon which to lean. For further assistance or of great stores including benefit for CCA. Use your information call Annie Reeves at 800-535-3643 or email Best Buy, Macy’s, Apple, hobby or something you [email protected] and Orbitz. It’s easy, just love to do to raise funds. go to GoodShop, click on • Denim Days programs we offer the store’s logo and then Raise funds at work for shop as your normally CCA. Establish a special • Toll-free hotline • www.ccakids.org would! You get the day or days for • List of qualified website same prices, but a employees to make a physicians • Annual Cher’s Family percentage comes to us! designated donation • Information and support Retreats • Cash for Trash! (cash or check) to CCA in • Educational booklets • Public awareness Save your discarded return for wearing blue • Financial assistance • Family networking phones and empty laser / jeans. The donation is • CCA Network, a quarterly • Advocacy ink cartridges and CCA usually $1 to $5, newsletter can turn them in for depending on how often the event takes place (for 14 example $1 for a weekly the events, raffles and • CCA supporter Dan Log onto donation, $5 for a funding efforts of CCA Freeman is a Lifelock firstgiving.com/ccakids monthly donation). Any and our supporters. Pass affiliate (the service that and tell your personal higher amount would be the donor envelope to protects your identity story or post an event at the discretion of the someone you know from theft) and will you're having. You can donor. looking to support a generously donate even set a goal and track • Civic Organizations charity. And when you $15.00 per sale to CCA success! When you tell Public awareness leads to are finished with your when buyers enter the your own story about contributions. Contact copy of our newsletter, promo code: CCA. See your CCA Kid or why you and solicit opportunities spread the news! Pass it www.lifelock.com to find are involved with CCA, to speak to your local along or leave it in a out how the service folks will respond civic organizations such waiting room. works and to help raise because they know YOU! as Rotary Clubs, Kiwanis (Remember to remove funds! • Currentfun.com Clubs, even HOG your address label.) • Tupperware now has a -Go to currentfun.com organizations (CCA has • MonaVie formal fundraising -Click on “start shopping many ‘biker’ supporters). Raise Funds for CCA with program and you may now” Distribute brochures MonaVie, an amazing contact CCA mom, -Buy what you want and/or newsletters or product packed with Kathy Hubbard, -Click “proceed to other CCA-sanctioned antioxidants. Four ounces [email protected] to checkout” materials for awareness per day has the antioxi- learn more about how to -Choose Texas for the and information. Ask for dant capacity of 13 serv- raise funds for CCA. State contributions. ings of fruit and veggies!! • www.itzybitzy.com -Then click on Children's • Friends / Family Contact CCA mom, Itzy Bitzy sells infant and Craniofacial Association Letter Appeal Draft Rachel Johnson to find toddler squeaky shoes. -Then finish the order as letter to family, friends out how you can help Children love to wear you would any order and acquaintances— CCA and yourself with these shoes that squeak Folks can also order anyone who has met or this outstanding gift from when they walk, and they catalogs through that site encountered your child. the rainforest. also serve as a great if they want to go door Contact CCA for a www.mymonavie.com/TJ therapy tool in helping to door instead of the sample letter. andRachel little ones learn to walk internet. CCA receives • Kitchen Shut Down phone: 209.664.0500 or properly. These shoes also 50% of what folks order Raise funds by raffling off 209.505.1673 help parents keep track this way. The catalog chances to win meals for • Buy Gifts from of their little ones. 10% changes seasonally, so it's every day of the week, so BeautiControl at of Sales go to CCA. not a one-shot fundraiser the winner can “shut www.BeautiPage.com/cc • FirstGiving ...people can go in at any down” their kitchen. afriends and CCA gets We're pleased to provide time (as long as they go Local restaurants can the agent profit! a free customized CCA into currentfun.com (not donate meals or coupons. Questions? Email Rose 'firstgiving' site for the regular Current sight). This idea could be used Seitz at rseitz@directed- anyone who wants help -Place and order and for a week of tech.com. These gifts raise funds for CCA. CCA will benefit from it. entertainment, such as cause no clutter, because movie rentals or theater they get used up! New Ideas tickets. Call CCA for • Book all of your • Pampered Chef CCA mom, Amanda Keeton will assist more information. travel needs at anyone who wants to raise funds using Pampered Chef. • Collection Cans Ask www.ytbtravel.com/ccaki There is a program in place to support charities like CCA local businesses to place ds including flights, with 10-15% of sales and/or Amanda will work a can or box (provided by cruises, hotels, rental individually with anyone wishing to host a cooking CCA) to collect donations cars, even your passport. show. She will also donate 10% of her commission.Go or take a can around to A percentage comes to www.pamperedchef.biz/amandakeeton or email her collect donations. back in funds for CCA. at [email protected] • Get On Board! Read our And, you may rest easily, newsletter and learn knowing the site is Looking for ideas? about and participate in powered by reliable Contact Jill Gorecki at [email protected] Travelocity. 15 fundraising news

2008 FAMILY FUNDRAISER GOAL THERMOMETER CA’s family fundraising goal for 100% $100,000 c2008 is $100,000. By the end 90% of the first quarter our families had 80% raised $13,363.50. By the end of 70% the second quarter you had raised a 60% total of $37,631.66. Keep up the outstanding work! The goal is in 50% sight and you are hot on its trail! 40% Thanks so much for all you do! 30% 20% 10%

ick Wiese of Baden, PA, held an educational nfundraising initiative at his high school, enlisting his craniofacial plastic surgeon, Dr. Joseph Losee, and orthodontist, Dr. Lisa Vecchione, to inform students about craniofacial conditions. Nick entertained the crowd by showing a movie that evening, his way of thanking all ig-hearted the donors. Thank you, Nick, for spreading awareness that CCA kid, b fosters acceptance and for contributing more than Chase Ingram, $2,000 for CCA kids! celebrating his eighth birthday, asked for donations to CCA instead of presents. He also contributed priceless hugs all around at the retreat. We love you too, Chase!

reddie Seitz of Poland, OH, enlisted his local f Starbucks and a great group to put in more than 100 iss Antasia Hart, 6, of Baytown, TX, whose baby volunteer hours. Teaming up with the United Way Youth mbrother, Wade White, was born with Pfeiffer Day of Caring in Youngstown, OH, CCA will benefit from syndrome, reached out with friends in her community and the successful initiative. Thank you! held a rock sale for CCA. Thanks, Antasia. You rock!

16 continued next page  good news save the date September 22, 2008 Whitestone Golf Club Benbrook, TX

CA will hold the first cannual Jylian’s Links of Love benefit golf tournament On Monday, September 22, at Whitestone Golf Club in Benbrook, TX. The he Gulich Family of tournament will begin with t Big Flats, NY, started a shotgun start at 1:00, their Ryan’s Road (named o matter what your political preference, there’s no and will end with a dinner for son, Ryan Jr., who was denying it’s pretty cool meeting a candidate! Scott n and silent auction. Visit born Apert syndrome) Guzzo and his family got up close and personal with fundraising effort, which Senator Hillary Clinton and even got a mention in her www.jylianslinksoflove.com included a candle sale that speech on the evening news. Just another amazing for registration and has raised more than $800 adventure for one of our CCA kids! sponsorship details. so far for CCA. Thank you! Come join us!

save the date

June 24-28, 2009 CCA’s 19th Annual Family Retreat Grapevine, TX

eter Dankelson and he 19th Annual Family phis elementary school, t Retreat will be in St. Patrick’s in White he Dankelson family was recently invited to Grapevine, TX (10 minutes Lake, MI, held a Casual Washington DC for Family Advocacy Day, which is from DFW airport) June 25 Day for CCA and raised t sponsored by the National Association of Children’s $230. Thanks, Pete! – 28, 2009. CCA will also Hospitals. Children’s Hospital of Michigan invited them hold a one-day to attend. They were one of 30 families representing igh schooler Taylor children’s hospitals from across the country. While there, craniofacial symposium Bishop, of h they were able to meet with Congressman McCotter as June 24. See you next year Birmingham, AL, held a well as three other legislative offices. Peter was a perfect in Texas! Denim Day raising $825 politician…shaking hands and introducing himself. What for CCA. Thanks, Taylor! an amazing experience! 17 donors, january 1 – june 30, 2008*

Gifts from David Luther, Jr. CCA Friends CCA Sponsor Law Offices of Steve Howen, in James Macaulay ($100 +) ($1,000 +) honor of Brian Scott Cook Individuals Domenica & Robert McKinnon Sarah Erb & Andrew Keller, in Russ & Bonnie McMinn Carol Anthony Michael Carr honor of Olivia Sanborn CCA Supporters Ellen McPadden Mari-Jo & Paul Batchelor Jane L. Goodman Donald & Ann Lucas, in honor of ($25 to $100) Carol Melton Phyllis Breeden Greg Luetkemeyer Brody Jane Monell Michael Budish Bill & (Condino) Donald & Ann Lucas, in honor of Jeffrey & Amy Abernathy James J. & Maryjo Montalbano William “Doug” and Ann Burgin Mecklenburg Brody Lucas on our 43rd Susan & Bill Addison Scott Montgomery Nancy Burson Charlene & John Smith Anniversary Deborah Allen Moore Thomas Callahan Ellen McPadden, in honor of Carolyn Alloway Jessie & Theodore Morgan Larry Carpenter CCA Benefactor Jeremy Dale, from Aunt Ellen Anonymous James Morris Roger Chin, DDS, PS ($5,000 +) Bill & Christine Mecklenburg, in Catherine Arnold Harlena Morton Diana Critchlaw honor of Morgan Donnie Balentine Francis W. & Toni A. Mosier Kristine & George Dale Mark Hagen Jim & Maryjo Montalbano, in Trevor Bartley John Moulton Gerald & Ruth Dankelson John & Sheryl Paul honor of their daughter, Glenn Berard Mina Mulvey Anthony & Sandra Deakins Jennifer’s 33rd birthday Douglas Bolduc Janell Nelson Jess & Alice Evans Jessie & Theodore Morgan, in Mildred Bonneau Julianna Nicholl Vincent Farina & Leigh M. Soda CCA Guardian honor of Morgan Baldwin from ($10,000 +) Philip & Judith Bressler Ron & Jackie Nierman Robert Feinstein Nana Lynn K. Britt Ralph Nuckols John & Follett Marie Florence Desrosiers Trust Ralph Nuckols, in honor of Jeremy Stephen Bronski Ann Patterson / Howard Langner Dudley Godfrey Bequest Dale Ann Byrd William John Luyben Margaret Grupp Andrea Richard, D.O., in Alexandra Chambers Mary Ann Nowicki Sarah Hall of Ram Nath Pathlak Marsha Chivers H. R. & JoAnn Olien Ebby Halliday Acres Memorials / Jere Robertson, in honor of Jane Brian Scott Cook Sandra Peckinpah Carol & Mike Hazelgrove In-Honor Gifts Monell Arlene Coudare Anne Peterson John “Jim” & Arleen Heirty Gail & Walter Rook, in honor of Murray Covens Ann Ranfranz Pauline Hicks Kevin Alicbusan, in honor of Aaron Scott Guzzo James & Nancy Cutler Annie Reeves Elizabeth W. Jones Nocum’s 1st Birthday, by Jessica & Frederick Schwerd, in Grace & Gary Deily Mark Roberts Roger & Carolyn Lamb Caroline Mingoa honor of Megan Cronin J. & C. Delmonte Jere Robertson Rear Admiral Lloyd & Junia Moffit Trevor Bartley, in honor of Rocky, William Schwerd, in honor of Sergio Dominguez Amy & Barry Rochus Sarah & Dean Moor with love in our hearts Megan Cronin Scott Ensign Kim & Frederick Romeo, Jr. Elizabeth Moulton Renee & Wayne Baxmann, in William & Nancy Suwalski, in Patricia Ernst Gail & Walter Rook Robert & Ottie Paslay honor of Robbie Gorecki memory of Marvin Mandel Kimberly & Mark Fanguy Iris Schell Chris Riener Angelic Bruns, in honor of Cher’s John & April Wharton, in honor of Richard Ferle Michael Schlehuber Randolph Schaefer Birthday Amber & Brooke McAnnely Francis Fisher William & Jessica Schwerd Roberta & Robert Schini, Jr. Doug & Ann Burgin, in honor of J.B. & Cynthia Wills, in honor of Gary Fitzsimmons Jeffrey & Lana Servatius Jessica & Frederick Schwerd Rick Dornier Reed Wills Thomas Flores Mary Ann Silvestro Eileen Serafine Larry Carpenter, in honor of Cher’s Theresa Fouts Richard & Mary Skoumal Pat & Robin Shannon Birthday Corporate / Mary Kay & Thomas Gardin Cheryl Smith Michael Slusher Alexandra Chambers, in memory Alison Gelbman Stephen Smith Margaret Smith of John Michael Chambers Foundation Gifts John Ghiconides Duane D. Stanley Brent & Shelle Summers Gerald & Ruth Dankelson, in R.M. Gill Herbert Stenzel Elizabeth Sweeney memory of Gordon Nielsen CCA Corporate / Sidney Goldman Erin & Crispin Stephens Bradley Thompson Gerald & Ruth Dankelson, in Foundation Friends Dr.William Green William & Nancy Suwalski Kevin & Jennifer Trepani memory of Elaine Petsche (up to $1,000) Garrick & Jennifer Groves Laura Talmus Lynn Yetra & Donovan Ambrose Grace & Gary Deily, in honor of Nicole & Ryan Gulich Stephen & Jennifer Taylor Paula Wagner Jeremy Dale America’s Charities (Employee Maurice Gutzler Susan Thomas Kenneth Wilson J. & C. Delmonte, in memory of Giving Funds Management) Jennifer & Michael Hastings Amy Thornton Betty Smith American Express Foundation John Hermanek & Mary Drill Kay Van Cleave, PH.D. CCA Extended Family Thomas & Shelley Flores, in honor (Matched Gifts of Janell Nelson) John & Theresa Hospodka John & April Wharton ($500 +) of Braxton Flores AT&T United Way Employee John & Heather Hutchinson Lawrence Whitler Garrick & Jennifer Groves, in Contributions Nicole Irvolino J.B. & Cynthia Wills Martha & James Brown honor of Ella Bank of America (United Way A.E. Karpen Eva & Steven Wilms Fred & Judi Freeman Hearts and Hands O.C.C.L., in Campaign Employee Giving) Debra Keith Stephen Wright Jill Gorecki honor of Kathryn Hopkins Century Lodge No 492, Order of Joseph Klein Casey Wyse Robert & Julie Horn Jim & Arleen Heirty, in memory of Odd Fellows Barbara & Andy Laird Carol Yash-Debow Jonathan & Deborah Kantor Margaret Lux Charitable Auto ResourceS (CARS) Jessica Looney John Zaengle Donald & Ann Lucas Jim & Arleen Heirty, in memory of vehicle sales incentive program Kenneth Luby Robert Nordness Lois Witkowski Cher Convention Renee Lucckino Paul Pokladnik Jim & Arleen Heirty, in memory of Cleveland Bakers Local No.19 Shareall Dave Cody, Sr. CFC Baltimore Courtney Vincent CFC Central Florida Area 18 new booklets CFC Central Texas United Way of Tucson and Sarah Orne Jewett Collection for CFC Chicago Area Southern Arizona CCA/ Mary Zimmer, CCA CA is happy to announce our latest CFC Coachella Valley Twentynine Verizon (Matched gift of Robin Volunteer booklets! We now have “A Guide to Palms Area Chupurtinov) Smiley Face Campaign Collections c CFC Eastern Massachusetts A grant from the Gil & Dody / Peggy McDannel, CCA Understanding Pierre Robin Sequence” and CFC, Fresno County Weaver Foundation Volunteer “A Guide to Understanding Cleft Lip and CFC Global Impact, Overseas Wellpoint Foundation Funds Palate.” CFC LA Area Management $1,000-$5,000 CFC Maricopa County Wells Fargo (Employee Giving) CFC Middle Tennessee / Nashville Cash Collection for CCA / CFC New Orleans CCA Corporate / Margaret Jenna, Dalton Family, CFC New York City Foundation Sponsors CCA Volunteers CFC Niagara Frontier Retreat “Chance Raffle” held at ($1,000-$5,000) a guide to understanding CFC Southeastern Connecticut CCA’s Annual Family Retreat in pierre robin CFC Southwestern Idaho Grant from Max & Victoria Dreyfus Myrtle Beach, SC sequence CFC Yellowstone County Foundation Starbucks February Community Department of Social Services, a guide to understanding The Redwoods Group (Matched Clean-Up / Emily Tipton, Sisseton, SD cleft lip Gift of Bill Mecklenburg) Organizer w/Jana Peace, CCA and palate Dream Kitchens, Inc. by Keven & Matching Grant funds from Sam’s Volunteer Terri Schmidt Club Wendelyn’s ‘Course of Dreams’ children’s craniofacial association Financial Alternatives a publication of Grant from Starbucks Corporation Golf Challenge / Wendelyn Funding Factory Recommended grants from Osborne, CCA Volunteer Gonser & Gonser by Cleo Gonser Triangle Community Foundation a publication of Hearts and Hands O.C.C.L. children’s craniofacial association Vivo Brothers, Inc. Italian Club of Dallas $5,000 or more Wal-Mart Corporation Jim Wade Investments Cher Convention John Ryden Construction Spanish Booklets: CCA Corporate / Justgive (donors listed separately) CCA is now offering our booklets in Kroger (purchases percentage Foundation Partners $10,000 or more incentives) ($5,000 or more) Spanish! These booklets can be found on our Law Offices of Steve Howen website (www.ccakids.org). Nature’s Enterprises dba Euronat Association Works by John & $25,000 or more by Michael Carr Sheryl Paul Network for Good (donors listed Grant from Jorge Posada Henry’s March / Johnson Family, separately) Foundation Rachel, TJ, Lauren, Henry Office Depot (Rebate) Grant from Stemmons Foundation PASCO Pfizer (United Way Campaign guía para entender el Fundraising síndrome Employee Giving) de apert The Prudential Foundation Events (Employee/Matching Gifts) craneosinostosisguía para entender The Prudential Foundation Up to $1,000 (Matched Gift of Diana Critchlaw) Alexa’s Appeal for CCA, Denise

children’s craniofacial association Safeway, Inc. (purchases percent- Rast, CCA Volunteer una publicación de age incentives) Cash Collection Cans placed for Sarah Hall Productions by Sarah CCA / Kim Rogers, CCA

Hall Volunteer una publicación de Schoolpop (online purchases per- “Current.com” Catalog children’s craniofacial association centage program) Fundraiser / Mark & Laurel guía para entender el microsomia Triangle Foundation Sanborn, CCA Volunteers hemifacial United Way of Brevard Italian Club of Dallas Collection United Way of Cedar Valley for CCA Ryan’s Road for CCA / Gulich guía para entender el United Way of Fresno síndrome de United Way of Metro Dallas Family, CCA Volunteers pfeiffer children’s craniofacial association

una publicación de

*Listed are Monetary Donations of $25 or more through 2nd quarter, 2008. We are extremely grateful for these and all other donations, fees, purchases, fundraisers and in-kind donations not recorded here.

una publicación de children’s craniofacial association We do our best to accurately recognize donors. If you notice an error, please let us know. CFC (Combined Federal Campaign, federal-employee giving) 19 in Spanish. Then Dr. Carlos Barcelo, a craniofacial reconstructive surgeon from Dallas, TX, reviews cheers the translations for medical Honorary Chairperson: for volunteers! accuracy. After that, Cher Monina Gilchrist of Board of Directors: 3 Rose Seitz, CHAIR, Youngstown, OH Monina’s Kurt Allen, JD, CPA, CFP,WMA, Enterprises in Canfield, OH Carrollton, TX, George Dale, Corning, NY checks them for Tony Davis, DMD, Tuscaloosa, AL Donna Gossett, Cullman, AL consistency. So Paula Guzzo, Evansville, IN far, 10 of CCA’s Bill Mecklenburg, Morrisille, NC 11 booklets Erica Mossholder, Tuscaloosa, AL Robin Williamson, Carrollton, TX have been Stephen Wright, San Francisco, CA translated and Medical Advisory Board: are in various Jeffrey Fearon, MD, CHIEF ADVISOR stages of Dr. Carlos Barcelo Adrianna Napolis Monina Gilchrist CCA Network Editor: publication. Kelly Liszt It continues to amaze CCA Network Design and CA has a circle of In addition, CCA has a and please the CCA staff volunteers who help team of volunteers who Production: c and board that so many Robin Williamson, Williamson improve the delivery of our translate our syndrome people donate their Creative Services, Inc. services to our Spanish- booklets for our Spanish- expertise to help others. Executive Director: speaking families. speaking families and CCA could never provide Charlene Smith Adrianna Napolis is one healthcare providers. CCA the vast number of services Program Director: of these volunteers. She board member Erica without these incredibly Annie Reeves communicates with Crabtree-Mossholder generous people! Development Director: families in Spanish, so their heads this project and has Jill Gorecki needs are made clear to recruited Meliza Ramirez CCA’s staff. She’s always to translate the booklets. VOICE 214-570-9099 available and willing to Meliza, who lives in FAX 214-570-8811 give her time. Tuscaloosa, AL, has a PhD TOLL-FREE 800-535-3643 URL CCAkids.com or CCAkids.org

NONPROFIT ORG children’s craniofacial association U.S. POSTAGE 13140 Coit Road, Suite 517 • Dallas, TX 75240 PAID RICHARDSON, TX PERMIT NO. 128

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