ccanewsletter of the children’s craniofacialnetwork association Cher — honorary chairperson summer 2005 inside

cca teen brittany stevens...... 2

cca grad tiffany kerchner...... 3

cca supersib message lauren trevino ...... 4 from the chairman 2005 retreat recap . 5-7 Brenna Johnston n the spring issue of the fundraising news...... 8 inewsletter Tim Ayers brenna’s story announced that he was cca programs ...... 11 by Robyn Johnston stepping down as calendar of events. . . 11 Chairman of the CCA Board of Directors. He has early a decade ago, my husband Erin and I discovered provided countless hours of prosthetic ears . . . . . 12 nwe would soon be parents. Like all parents, we his personal time to our wanted to raise a child that was happy, healthy and well mission and we will miss nacc recap ...... 13 adjusted. On May 14, 1996, Brenna, the first of our three him as Chairman. children, entered the world. She instantly was my little Tim is not going far as he 3 cheers ...... 14 Sugarplum, such a sweet baby! will still be on the Board of Her journey has not been easy, but you would never Directors. He is especially pete’s scramble . . . . . 16 know it meeting her today. She knows that she’s a typical committed to leading our kid who just happens to have been born with head and advocacy efforts to get facial bones too small to function properly, and we try to health insurance companies 2006 Retreat Info keep her life as balanced as possible. Here’s the typical to cover craniofacial part: Her favorite food is catsup, with hotdogs and ham- The 16th Annual Cher’s surgeries that today are burgers, no buns. The not-so-typical part: She had nearly Family Retreat will be at classified as cosmetic or 40 surgeries before she was eight years old. She was born denied for other reasons. the Hershey Lodge in with Crouzons Acanthosis Nigricans, a rare variation of We know only too well Hershey, PA, on June 22–25. Crouzons Syndrome. that is not right. Tim, on For more information, Brenna has taught us so much in nine years, more than behalf of your colleagues most people learn in a lifetime. She was born with a contact Annie Reeves on the board and CCA strong will and something to teach the world. Over the at 800-535-3643 or friends – Thank you for [email protected]. see brenna, page 9 see chair, page 15 empowering and giving hope to facially disfigured individuals and their families ccateen

meet brittany stevens

ourteen-year-old began a bear collection, fBrittany Stevens, an which, from what CCA has outgoing girl from been told, is now quite , PA, is this extensive. issue’s featured CCA Teen. Brittany and her family She was born with Nager heard about CCA through Syndrome, a craniofacial a contact at Children’s Brittany Stevens condition that affects her Hospital in Philadelphia. learning ability, breathing, Since they have been a part eating, speech and hearing. of CCA, they’ve been to She has had 14 surgeries so quite a few retreats — far and has another one Atlanta, GA, where she had pick of the litter scheduled for this summer. the opportunity to meet Brittany begins 10th Cher; Tempe, AZ; grade this fall. When at Washington, DC; St. Louis, hanks to all of the following CCA Families and school, she learns to count MO and this summer’s t Friends for recycling “litter”… collections of and build on her vocabu- retreat in Nashville, TN. discarded cell phones and empty computer and laser lary. She also loves to color. Despite her physical and disk ink cartridges go for rebate points which have Another activity at school is mental challenges, Brittany translated into over $500 so far for our cause! her life skills support class, remains upbeat, strives to where she learns how to do everything everyone else CCA Funding Factory Participants cook, do laundry and take does and has a great sense Lee Ann Adams Annie Reeves public transportation. of humor. When you see Tim Ayers Rose & Fred Seitz Outside of school, her give the thumbs-up Brittany likes shopping, sign, she’s telling you, Shirley Baptist Shelley Shields listening to music, seeing “Good job, baby!” Covenant Medical Group Amy Shackleton as many movies as she can Kristine Dale Bill Sims and keeping up with the Tony Davis, DDS Eberhard Struss latest fashion trends. Jill Gorecki Robert Vargas Brittany also collects but- terflies and hearts, two of Donna Gossett Amber White her favorite things. And Heather Lermont-Pape Robin Williamson since she was a baby, she Alexis Menz Stephen Wright Dan Paulson Wendy Zastrow 2 tiffany tells it like it is

y name is Tiffany time. I used to get so I've always been told that if mKerchner. I'm 16 upset, so I had some plastic I ever get made fun of, I years old and live in surgery done. I had eight should just smile at them. Pennsylvania in a small surgeries total and don't And I do. They hate that! town called Fleetwood. I regret any of them. Now, I I have many hobbies. My Tiffany Kerchner attend Fleetwood High can smile, and that's all main interest is music — School, where I’ll begin that matters. anything relating to music. become an elementary 11th grade this fall. The kids at school have I started taking singing les- school music teacher. When I was four years matured, and they don't sons when I was seven and In 1999, Diana Sweeney old, I was diagnosed with bother me anymore. have loved singing ever told my mother and me Moebius Syndrome, a rare Actually, I've made so since. I also love playing about CCA, and we’ve birth defect caused by the many friends. Still, there instruments — piano, bells, gone to every retreat since absence of the sixth and are a few people that will xylophone, guitar, chimes then. I used to think I had seventh facial nerves. say some rude comments, and the vibes. I love it so bad having all these When I was younger, the but I don't let them get to Broadway plays and acting. surgeries, but when you kids at school picked on me. My real friends love I've been in a couple of get there and look into the me and teased me all the me for the person I am. plays, including The Sound eyes of some of the little of Music. kids, you know they've I love ice hockey, and I been through so much have season tickets for my more than you. It makes favorite local team. you not want to feel even Football, baseball and the least bit sorry for NASCAR are also some of yourself. my other favorite sports. I'm very glad that I have After I graduate from the opportunity to attend high school, I plan to go to the retreats. Through CCA, college and study music. I’ve made many friends Since I love music, children and have so many good and teaching, my goal is to memories. ccagrad

3 ccasupersib

being gavin’s sister

y name is Lauren tournament. Gavin plays mTrevino. My par- on a soccer team, too. ents are Tricia and Ruben I’m in the enrichment Trevino, and my brother is program at school, which I Gavin. really like, and get straight It is hard to be Gavin’s sis- A’s and S’s. I like to read all ter. Gavin has a trach and a of the Harry Potter books, hearing aid. Sometimes mysteries and Lizzie when we go places people McGuire books. Gavin does stare at Gavin and me, and well at school, too. it makes me feel uncom- It’s fun to have Gavin as fortable. a brother because he is When my parents first funny and energetic. But told me that Gavin was like a lot of brothers, Gavin getting a trach, I was nerv- can sometimes be a pest. I ous and scared. I didn’t love him all the same, want Gavin to get hurt, though! but it had to be done.

Over the years Gavin has Lauren Trevino had four more surgeries. There were two main surgeries, not including denim days the trach. Each time I was scared and nervous, but all of our prayers seemed helley Shields of Lubbock, Texas has been busy raising money for CCA. to work. SShelley, along with Deanna Moran and the entire staff at the Central Billing We play soccer and we sometimes play baseball Office for Covenant Medical Group, put together a Denim Days Fundraiser with with our dad. Gavin can hit all proceeds benefiting CCA. During a Denim Day, employees donate to dress the ball far. I am in the developmen- down for a day, wearing jeans or casual dress not otherwise allowed under their tal soccer program for East company dress code. It’s a great way to raise funds! Not only did they raise Orange, a more difficult league. We won our last $122…they also collected 17 cell phones. A big THANK YOU goes out to all who participated at Covenant Medical Group! 4 2005 retreat recap

Instead of the usual write-up, the kids — from the entertain- folks at CCA would like to give you ment and activities to the a family’s perspective of the food that was served and retreat. Here’s a letter from the gifts that were generously Dankelsons, who just came back from this summer’s retreat in given. Nashville, TN. It was their first one The retreat is the one to attend, and they had a remark- weekend a year that these able time. kids get to be in a “majori- ty” group, be with others who understand how they Hello Family & Friends, feel and simply “let their hair down.” Many of these ur family had an kids have attended several amazing experience in retreats and you could just Nashville, TN, last week- Pete, Darin, Dede and Jacob Dankelson see the joy in their faces all end. We attended our first hospitals, white coats or dinner/dance bash on weekend long. Also keep in family retreat held by Cher needles in sight!). Saturday night. And, oh mind the severity and fre- and Children’s Craniofacial Our weekend started on what a party it was! To quency of surgeries these Association. The children Thursday evening at the see these kids in action is kids endure in addition to and families that we met annual ice cream social and simply indescribable. their facial difference, so are nothing short of mirac- was followed by lots of Darin and I are extremely you can imagine how they ulous and amazing. swimming on Friday with a impressed with CCA, espe- must look forward to this Many of you receive the group dinner at the cially the organization and event. Our family is already CCA newsletter, which Rainforest Cafe. Saturday thought that goes into this looking forward to attend- always profiles the children dawned the annual annual retreat. The organi- ing next year’s retreat in and families. Meeting them pool/pizza party, which the zation provided virtually all Hershey, PA. in person, however, was hotel graciously allowed us our meals and entertain- Thanks for letting us incredible — especially dur- to have in a not-yet-open ment for the entire week- share our awesome week- ing such a fun event (no spa facility and then the end. They only charged end with you! $50 per family to register, and every year they give The Dankelsons about 20 “scholarships” to Darin, Dede, Peter & Jacob children and families who would otherwise not be able to afford the travel and hotel expenses. Cher sent each child as well as their siblings very nice “goody bags” with gifts, and some included GameBoys and iPod Shuffles (depending on age). What impressed us the most was how every- thing was focused on the see retreat, page 6 5 retreat, from page 5

6 7 your fair share what’s cookin’? Did you know… e’re compiling a CCA Cookbook for sale to raise hen the United Way Campaign at work asks you w to contribute your fair share or any amount, you w funds and awareness! can designate that the funds go to Children’s Craniofacial If you have not yet contributed your favorite recipes, Association. CCA is not a United Way beneficiary agency please email to [email protected] or mail to the but directed donations may be made to any 501(c)3 CCA office (see back of newsletter for the address). nonprofit organization you request. That way you will be helping your workplace meet their campaign goals as well The Cookbook project will be launched in 2006 with as this important cause! Thank you! families taking pre-orders in the Spring. We will also make it available to the general public through our financial assistance Web store. The books will include some informative pages about o you travel to receive quality medical care? If you your charity and photos of retreat fun, not to mention ddo, and need financial help, CCA has a financial recipes contributed by our CCA families. These will assistance program that will help with food, travel and/or lodging. Call CCA for an application at 800-535- make great gifts – especially if your recipe is in there! 3643. All we ask is that you apply at least four to six The project will raise awareness for craniofacial weeks prior to your next trip. conditions, CCA’s mission and vision, and of course, $$$. focus on a $1,000 bonus!

hat’s right, help CCA zero in on a $1,000 bonus by It’s easy to help us earn the $1000 bonus – and start earn- t participating in the 2005 Schoolpop 20/20 promotion! ing contributions all year round! Here’s how you can help: It’s easy! When 20 Supporters sign up, register, and use a new Schoolpop VISA card and 20 Supporters (any 20 1 Simply apply for the Schoolpop VISA card online at Supporters!) make at least one online purchase through http://schoolpop.p01.com/u.d?WkpJ2VfonU9d5txb=153 http://schoolpop.p01.com/u.d?MEpJ2VfonU9d5toR=14201 41 or by calling 1-800-297-1286. between 4/1/2005 and 12/31/2005, CCA earns a $1,000 2 After you receive your Schoolpop VISA card, register it at BONUS! http://schoolpop.p01.com/u.d?RkpJ2VfonU9d5txW=153 And that’s not all. The 20/20 Promotion has other bene- 51 (in the MY Card – My Account section). fits that will help you earn even more for your charity: 3 Activate the card by making a purchase at any store or • Every time you shop at online merchant. http://schoolpop.p01.com/u.d?EEpJ2VfonU9d5txc=15331, 4 Shop through Schoolpop.com and “double dip.” Earn the merchant contributes a percentage of each purchase the merchant contribution for our charity and qualify as back to CCA. a Supporter toward the $1000 bonus. • CCA earns a one-time $20 Activation Bonus for every Schoolpop VISA cardholder who activates their new card. For complete program details or more information, con- • Every purchase you make with the Schoolpop VISA tact Jill Gorecki at [email protected] or call the office card earns an additional 1% contribution. at 800.535.3643. Remember – your participation will help CCA earn a $1000 bonus – and your everyday purchases will continue to benefit CCA all year ‘round! 8 brenna, from page 1 sleep apnea constantly smiling and affected her daily function- teasing her years, we have figured out, ing, because she rarely had doctors with she doesn’t follow any a restful sleep. She started her spunky- textbooks when it comes using oxygen at night but-sweet atti- to medical procedures. Her when she was four. She tude. They little body writes its own got by without a tra- decided to let rules, much to her doctors’ cheotomy, but she did suf- her bones dismay at times. fer due to her apnea. As a grow and Brenna’s first year was family we wanted her to mature for difficult, but with lots of have more freedom to live a while, as help from uncountable without restrictions — if they were still sources, and our own we could make it work. very thin and determination, we slowly Some of her cranial fragile. put the pieces together. I bones were fused, so she At this point, firmly believe each of us had her first major cranio- Erin and I real- Perry, Erin, Caden, Robyn and can choose to make the facial surgery at six months ized Brenna needed a play- Brenna at this year’s retreat. best of each situation, or to expand and reshape her mate, another child who not. Most things are in forehead and release the would love her through ments, a few temporary God’s hands, not ours. We pressure on her brain. thick and thin. Caden, the shunts and finally a perma- have chosen to keep a pos- Several complications first of Brenna’s two broth- nent VP shunt to divert the itive attitude and have the occurred which would ers, was born. CSF pressure, she unfortu- determination to work plague us later on. Her The day after her fourth nately lost her new fore- through issues construc- bones were weaker and birthday, Brenna went back head to the infection. She tively, even the tough ones. more brittle than suspected. to Seattle to have her was finally released to go It really does make a differ- We knew immediately post- frontal skull bones recon- home in August. We didn’t ence. Also, we strongly op that things weren’t right. structed. Unfortunately, a know if she would walk or believe in the “village rais- As it turned out, the frontal screw from her original sur- talk again, but she did, ing the child” approach. advancement would have to gery had migrated, sharp- with time. Her success is a result of be redone at some point. end down, into the right Brenna started kinder- the many people who have For this, we were referred to frontal lobe of her brain, garten that year, but was been involved in her life. doctors out of state. the speech center. It had to now required to wear a Brenna’s breathing has In the meantime, I had to be removed. She also had helmet during physical been an issue we have fight our insurance compa- undetected hydrocephalus, activity, since her forehead bone was now missing. We [Brenna] was born with a strong will let her decorate the helmet struggled with until just this year. She required and something to teach the world. nasal stents at four ny to let us go out of state which caused her cerebral with stickers to make it her months, and then again and obtain the expertise spinal fluid (CSF) to leak own. She knew that she before age two. We had to we so desperately needed. uncontrollably. Brenna needed to wear it because use a special feeder so she We found our team of ended up with meningitis she was missing some could get enough calories doctors in Seattle, a team and several other infec- bones. She didn’t want to, to gain weight. She burned with whom we could easily tions, including one on her but she understood. more calories breathing communicate and trust. new, beautifully shaped After that summer, I than she could consume. By then, Brenna had just forehead bones. After sev- became pregnant with our She had to have her tonsils turned two. Already she eral surgeries, extremely third child, Perry. It was so and adenoids out. Her was a charmer, always aggressive antibiotic treat- hard on Caden to have me see brenna, page 10 9 brenna, from page 9 get her mid-facial bones allow for us to fly across the advanced via the RED nation, but thanks to CCA, device. This experience who helped with our travel, was bittersweet. It was a we were able to go. challenging summer, but it I am SO glad we went. has made all the difference It made such a huge in the world for her. difference for our family. Unfortunately, early on in The retreat has really the eight-week procedure, helped Brenna realize she’s she caught a very resistant not alone. It also enlight- staph infection, MRSA. So ened her brother Caden. we spent most of the sum- He got to see firsthand that mer in and out of the hos- lots of people are born a pitals fighting this infection little different, just like his while dealing with the sister. It helped him realize RED. Fortunately we quali- they are just kids too! fied for a wonderful pro- Once again, I want to gram called Angel Flight. thank the CCA for all they Very generous pilots donat- do and have done. The ed their time, airplanes and Cher concerts, the financial resources to transport us help and just being there. gone all the time, for med- surgery the following weekly between Seattle We feel honored to share ical purposes, that I wanted spring. The goal was to and home. It was a huge our story here in order to him to have a sibling who alleviate some pressure in blessing! help others understand could stay home with him. her hindbrain and spinal Brenna now has tons of they’re not alone. That fall, Brenna’s doctors chord. Since she had no energy. She is slowly and We have learned so discovered that she had a forehead bone, they had to steadily catching up in much in the last nine years. moderate case of Arnold design a special spongy school and has a real zest Our path has not been Chiari malformation, where apparatus to do the poste- for life. She also knows easy, but there’ve been so the base of the hindbrain rior surgery. That summer, that if anyone has a prob- many rewards. We’ve tried slips down through the her doctors reconstructed lem with the way she looks to keep everything in per- base of the skull and her forehead using rib that it’s “their” problem, spective and retain some impedes the flow of CSF graphs and synthetic bony not hers. normalcy and balance in down the spinal column. material made of coralline She also received awe- our lives throughout the She developed a syrinx structure over a titanium some news — no more sur- medical craziness. Our (fluid bubble) in her spine, mesh. It was one of the gery for a while! We strong faith has also which affected her motor first big surgery’s that went enjoyed this summer to its helped us get through the coordination, endurance perfectly. fullest. We attended the rough times. I know God and control. Her energy Last summer, eight years CCA retreat in Nashville. has big plans for Brenna in level sank even more. She and many surgeries later, Brenna, Caden and I went the future. had headaches and her feet Brenna finally reached the two years ago in were numb and tingly. She phase in her medical plan Washington, DC. At that struggled in school. Her where she could finally time, our budget wouldn’t breathing was still margin- al, and the pressure in her brain was rising again. Watch www.ccakids.org for our affiliates’ link page and visit Brenna underwent her there before shopping, especially for the upcoming holidays! first Chiari decompression 10 ccaprograms and services in the spotlight

Families of craniofacial patients often call CCA to seek emotional support, discuss problems and identify resources. Through our database we are able to network families with support groups and/or others who have similar conditions and experiences. We also keep a list of helpful resources and are always willing to listen and offer emotional support to family members who need a shoulder upon which to lean. For further assistance or information call Annie Reeves at 800-535-3643 or email [email protected] programs we offer • Toll-free hotline • www.ccakids.com • List of qualified Web site physicians • Annual Cher’s Family • Information and support Retreats • Educational booklets • Public awareness • Financial assistance • Family networking a special message from cher • CCA Network, a • Advocacy quarterly newsletter e have a number of CDs from our Cher fund w appeal, “A Special Message from Cher” available download the newsletter for distribution to all your friends and family. Please con- sider handing some out where you live or work (with per- f you are currently receiving the newsletter by mail, but mission) during the month of September for CCA’s iwould rather download it from CCAKids.com, let us Craniofacial Acceptance month and help us spread aware- know by sending your email to [email protected]. ness about craniofacial conditions while raising funds. The online version is in full color! Children’s Craniofacial Association envisions a world where people are accepted for who they are, not how they look. .S. Congressman Mike Ross of Arkansas plans to Your help is most appreciated. Thank you! ure-introduce his Reconstructive Surgery Act when Congress reconvenes in September. This important piece Be one of the first 100 people of legislation seeks to guarantee medical insurance cover- to donate $100 or more and age for craniofacial surgery and health care. The next edi- tion of this newsletter and personal emails will provide receive a copy of the 20th families with more information on the legislation and how Anniversary DVD, Mask, you can help. starring Cher! To find out 2005 calendar of events more, go to our Web site date event contact at www.ccakids.com! September Craniofacial Acceptance Month www.CCAKids.com 800.535.3643 November 1 Deadline for recipe submission for www.CCAKids.com inclusion in CCA’s cookbook 800.535.3643 11 prosthetic ears: ticket to ride what you need to know hanks to all of our CCA tFamilies and Friends sell- aving a child who is approximate 40% reduc- the sculpture is molded ing tickets to our annual hborn without an ear is tion in hearing due to the and an elastic material is motorcycle raffle! very serious and upsetting. sound being conducted cast to replicate the image. As of the deadline for When this occurs it is through the temporal bone Finally, the prosthesis is this printing, the following important to know the to the inner ear. hand painted and tinted to folks were on board help- treatment options. This Individuals with microtia visually blend with the sur- condition, known as micro- have the option of no rounding anatomy. ing sell chances to win this tia is most commonly seen intervention, surgical ear On average, the process year’s “ride”: in hemifacial microsomia. reconstruction or prosthetic requires three office visits The term “micro” means construction. In this article and is painless. The cost of Stacey Atkins small and “otia” means we are going to explore the prostheses varies Kendall Bilbow ear. Translated literally the steps involved in according to the complexity microtia means small ear. obtaining a prosthetic ear. of the product. While the Tami Bowers-Feinstein For children or adults, A prosthesis is construct- patient is responsible for Kevin Braden microtia may appear in ed in four steps and the payment, medical insurance Alex Chambers varying degrees. They may patient may only need to may help cover costs. It is Lisa Crofton have no presence of an ear, be present for three pain- important to check with George & Kris Dale as little as a small bump or less appointments. your insurance company they may have a partially In step one, an impres- before making a decision. Dede Dankelson formed ear. One would sion is made to duplicate One main advantage of Sandy Deakins think a person would be the natural anatomy. Next prosthetic ears is not hav- Billy & Karla Dean unable to hear from a a clay sculpture recreates ing to endure surgical Beverly Grim microtic ear. However, in the appearance of the nat- intervention. It is important Casey Gore most cases, there is only an ural anatomy. In step three to completely research the options to be sure you will Alan Gorecki be satisfied with the result. Rob Gorecki check out our syndrome The advantage of surgical Jodi Klemann intervention is the fact that booklets Mary Lytle the ear doesn’t need to be Molly Lytle ave you seen the new and updated CCA syndrome replaced periodically, can’t Andy McCaslin / Porkys hbooklets? Four booklets in the original series of seven be lost and is less sensitive have been updated, and three booklets on additional top- to outside factors such as Chopper Co ics have been written. Each is written in an easy-to-under- makeup and hair products. Wendy Niemi-Zastrow After considering all of the stand format and is ready for downloading. Simply visit Karin Perry www.ccakids.org and click on Syndromes, then Booklets. options individuals can Mike Sanborn / Buffalo CCA is extremely grateful to craniofacial reconstructive make the educated deci- surgeons Dr. Davinder Singh, Dr. Barbara Honnebier and sion to most effectively Chip Campground Dr. David Low for donating their time and expertise to meet their needs Nicole Saylor write these booklets, which are valuable resources for CCA Elizabeth Schlecter families. This article is intended for informa- tion only and is not a recommen- Laura Thonnesen (See page 7 of the spring edition of CCANetwork for dation for treatment. Tammy Van Ness additional booklet authors.) Muriel Walker 12 north american craniofacial conference recap

he North American behavioral skills rounded a powerful guide to t Craniofacial Conference out the fun, interesting understanding risk for was packed with three days and educational activities. disease. With this of education, sharing The explorers’ club for important information, an resources and fun. CCA was kids with craniofacial dif- individual and his proud to be the Leadership ferences and their siblings healthcare professionals Sponsor of this important aged 7 to 11 featured can individualize care to event conducted by Cleft games and activities with prevent and screen for Advocate and AboutFace education and fun in mind! conditions for which one USA. Children with craniofa- Workshops included how may be at higher risk. cial conditions and their to answer questions about (To help gather this new staff moms, dads and siblings your facial difference when important information, visit member attended workshops espe- your parents aren’t around, www.hhs.gov/familyhistory/.) cially designed for their dealing with bullies and Special guest Barbara needs and interests. understanding your trip to Kammerer Quayle spoke to hen you call the Workshops for parents the doctor. the group with a delightful, w office in the morn- were designed to answer In order for parents to uplifting spirit. Her message ing, you will be greeted by their most pressing ques- benefit most effectively — It’s TOOL time: Turn tions and provide them from the experience, child- Social Challenges into Social the friendly voice of Kelly with a road map for their care for the little ones was Success by Practicing NEW Silverman, our new child’s future. Topics includ- provided, but they weren’t Behavioral Skills to Increase Administrative Assistant. ed research and access to left out of the fun. Confidence — motivated information, early interven- Children aged 0 to 6 par- everyone. Having experience in both tion services and how to ticipated in activities and Another special guest, a nonprofit and corporate jump insurance hurdles. games, watched videos humorist David Roche, environment, Kelly will be Adult sessions centered and just had a great time. inspired and entertained around other important One of the highlights the group with his personal maintaining our database issues, including employ- of the conference was story. Speaking on issues of families, donors and vol- ment and ADA law, insur- keynote speaker Major of self-esteem, diversity, unteers, as well as sending ance and legislation, and Daniel J. Wattendorf M.D., disability and facing out packets of information. secondary surgery and who spoke on the change, David transformed treatment. importance of knowing the lessons of lifelong Not only does Kelly bring a Teen sessions focused on family medical history. Dr. facial disfigurement into a positive attitude to CCA, the challenges transitions Wattendorf is a clinical compelling message. she also brings her can present. Workshops to geneticist with joint CCA congratulates Debbie help them with setting appointments at the Oliver of CleftAdvocate.org adorable accent goals, developing social National Human Genome and Rickie Gill, executive as well. Kelly and her skills and staying caught Research Institute and director of AboutFace USA, husband moved to Texas up with school when the Armed Forces Institute for a conference that made treatment takes them of Pathology. In his great strides in empowering from Baltimore about a away from the classroom presentation, Dr. those with craniofacial dif- year and a half ago. Kelly provided insightful and Wattendorf stressed ference and their families. valuable tools. Image knowing family history as lives in Las Colinas with her enhancement and husband, Josh. 13 cheers 3 for volunteers! very year CCA retreat and allows them to make eattendees anxiously notes during the weekend. anticipate the reveal of the In addition to the retreat (above) Robin, Bruce and Miranda Williamson. (below) Here are just retreat logo design, and work, Bruce and Robin vol- a few of Bruce’s t-shirt designs you may have in your wardobe… each year attendees are unteer in other capacities. surprised and excited about Robin has designed and the results. For the past produced CCA’s brochures, eight years, the retreat quarterly newsletters and logo has been created syndrome booklets. She pro-bono by an extremely designed the CCAKids.org talented artist in the Dallas website and designs area. And it just so hap- numerous printed materials pens this talented artist is for special events. the husband of CCA board Bruce designed CCA’s member, Robin Williamson. logo, was a regular volun- 2005 Retreat design Bruce and Robin, the duo teer at Our Children’s Store of Williamson Creative and steps up to the plate 2002 Retreat design Services of Carrollton, TX, any time CCA needs his have thrilled attendees help. And now, the next with interesting, whimsical generation of the ATLANTAATLANTA and even provocative Williamson family volun- CHER'S FAMILY RETREAT 2001 retreat designs. teers has entered the scene The 2005 retreat design, as 13-year-old Miranda “Nashville Cats,” was a along with her friend, huge hit. As a matter of Erinn Lopez, recently fact, several families were helped CCA staff prepare T T approached in the Opry for the 2005 family retreat. 2001 Retreat design Mills Mall and asked where Three Cheers for Bruce, they could buy the shirt! Robin and Miranda 2004 Retreat design After Bruce puts his cre- Williamson, CCA super ative spin on the design, volunteers – talented and Robin takes it and creates generous! the annual retreat program that allows attendees to Watch for more of Bruce’s talented stay in touch through listed work in the soon-to-open CCAKids.org Web store. email addresses, gives them the retreat schedule

2003 Retreat design 14 1998 Retreat design september is chair, from page 1 getting to know the new cca chairman children’s your leadership and for all craniofacial that you do! robert vargas, cfre Tim has left a big role to acceptance fill, but as the newly-elected obert has been in public education and human services month Chairman I am very com- rall of his professional life. He has an extensive mitted to CCA’s mission. background in nonprofit management, including program Knowing the reason, My immediate goals are to development and organizational leadership. While most of accepting the difference. work closely with the board his professional experiences have been with agencies members to fully utilize affiliated with national organizations, Robert is equally their skills, talents and com- adaptive at working with small “grass roots” organizations. oin the effort by spread- munity connections that Robert is the president/CEO of Disability Resources, Inc., jing awareness in your each brings to the table. I located in Abilene, TX and is adjunct faculty at Collin community. Watch for am also working with CCA County Community College in Plano, Texas where he details in your email or call Executive Director Char teaches English as a Second Language. Robert served as the CCA office before Smith to continue with our executive director of the Epilepsy Foundation of Greater September 1st for informa- plans for making our North Texas from 1999 until 2004. The Epilepsy Foundation tion on how you might programs and services fully affiliate provided individual and family support, employ- participate functional to our families. ment services and advocacy for persons with epilepsy. By the time this newslet- From 1985 to 1997, Robert served as executive director ter is printed and distrib- of United Cerebral Palsy of Metropolitan Dallas, Inc. Prior help uted our Family Retreat in to that, he served as the administrator of mental retarda- wanted! Nashville will be a thing of tion services at the El Paso State Center. Both of these the past. I do hope, how- organizations underwent significant program expansion in e invite and encour- ever, that I will have met residential and rehabilitative services during his tenure. He wage all CCA families many of you in Nashville as is past president of the Variety Club Care Van Program, an and friends to hold I plan to be there. I am organization that provides vans to nonprofit agencies. He fundraisers during anxious to hear from you is a Certified Fund Raising Executive and is a member of September for CCA’s and learn how CCA can the Association of Fundraising Professionals (AFP). Robert Craniofacial Acceptance continue to be a source of is also past president of the AFP Dallas Chapter and served month! The easiest to do support. Comments and on the national board of AFP. are the Denim Days (or PJ input from you can be He earned an undergraduate degree in psychology from Day or Hat Day etc.) at emailed to me at the University of Texas at El Paso and a graduate degree in your company or school for [email protected]. teaching from Oakland University in Rochester, Michigan. a small donation of say, Robert Vargas, Chairman He resides in Abilene, Texas. $1 – $5. Let’s see how Board of Directors everyone dressing down can add up! Contact Jill coming soon a senior moment Gorecki for information on ur new online Web how to set up a fundraiser. ostore will be available aby Boomers (folks born from 1946 – 1964) are fast soon on our Web site. Watch bapproaching retirement years and, with growing fami- for lots of great ideas for lies, are drafting wills and trusts as well as estate planning. holiday gift giving which will also serve to spread Please remember CCA when making those plans! awareness of CCA! Contact us if you’d like ideas which could have a tax advantage for you and your loved ones. It will have a www.ccakids.org profound and positive affect on our future! 15 third annual pete’s scramble

ete’s Third Annual Commerce Township The Dankelsons wish to Honorary Chairperson: pScramble for CCA was (Detroit), MI. Hosted once send their thanks and Cher held May 21, 2005, at again by the Dankelson gratitude to all of Pete’s Board of Directors: Beacon Hill Golf Course in family, the outing was generous individual and Robert Vargas, CHAIR, Abilene, TX another big success, raising corporate supporters as Tim Ayers, Washington, DC over $7,800 in direct dona- well as several PGA and Tony Davis, Tuscaloosa, AL Donna Gossett, Cullman, AL tions to CCA. NASCAR professionals Heather Lermont-Pape, Fifty-two players enjoyed who graciously donated Indianapolis, IN Dan Paulson, Fargo, ND a beautiful day of golf and memorabilia for the silent Rose Seitz, Youngstown, OH fun, ending at the “19th auction and raffles. Bill Sims, CPA, Dallas, TX hole” for raffles, prizes, a Mark your calendars Robin Williamson, Carrollton, TX Stephen Wright, San Francisco, CA silent auction and Cher’s for next year’s outing special message. Everyone on May 20, 2006, at Medical Advisory Board: Jeffrey Fearon, MD, CHIEF ADVISOR who golfed got a “Pete’s Beacon Hill. All levels of Scramble for CCA” T-shirt golfers and support are CCA Network Editor: Kelly Liszt to help spread awareness encouraged to attend! and acceptance of people CCA Network Design and with facial differences. Production: Robin Williamson, Williamson Word spread far about Creative Services, Inc. this year’s outing, thanks to Executive Director: an article about Peter in Charlene Smith the local newspaper and a Program Director: story published in Annie Reeves Children’s Hospital of Development Director: Michigan quarterly Jill Gorecki magazine. A “kick-off” Administrative Assistant: party the night before was Kelly Silverman also added to this year’s Business Manager: festivities. Cathy Evans

The views and opinions expressed NONPROFIT ORG in this newsletter are not necessarily children’s craniofacial association U.S. POSTAGE 13140 Coit Road, Suite 307 • Dallas, TX 75240 PAID those of CCA. DALLAS, TX PERMIT NO. 555 VOICE 214-570-9099 FAX 214-570-8811 TOLL-FREE 800-535-3643 URL CCAkids.com

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