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

cca kid lexie adams ...... 2

cca grad casey deakins...... 3

cca supersib lessons raven atkins ...... 4 learned

2005 biker news . . . 5-8 jylian’s he recent national ttragedies caused by 2006 retreat info . . . . 11 story hurricanes Katrina and Rita by Kendall Bilbow have presented Americans fundraising Jylian Bilbow with a few life lessons. news ...... 12-14 People of all economic levels were forced out of n March 17, 2002, we headed to the hospital to cca programs ...... 13 their homes, some with welcome our first baby daughter into the world. John o greater haste than others. and I always knew that raising a family was our first priori- calendar of events . . . 13 Some have already ty. I had been blessed with a happy healthy pregnancy, and returned home, and some my labor was to be induced on St. Patrick’s Day! The pain regional volunteers. . . 15 may never go back. Many caused by twelve hours of “natural” labor was almost affected will be able to 3 cheers ...... unbearable for me, but John vividly remembers how the 16 adjust to the economic mood of anticipation in the room suddenly changed to that burden and psychological of worry. Jylian’s heart rate was dropping drastically, and I hurt that they have was soon rushed to the operating room for an emergency experienced; many will not. C-section. John could only watch through a window in the As this panorama operating room, but he unfolded in the media I recalls the reaction of saw a parallel to CCA and the medical staff and the families affected by a the sense of urgency craniofacial condition. that filled the room. First, there is an immediate Jylian let out a faint cry impact on the family h- but had to be immedi- aving a newborn with a ately intubated. She craniofacial condition. see jylian, page 9 see chair, page 15

empowering and giving hope to facially disfigured individuals and their families meet lexie adams

Lexie Adams and her mom

ntroducing our latest classes for the past two and Lexie is really creative and She also had the iCCA Kid, six-year-old a half years. She really enjoys loves to color, cut and opportunity to meet Cher Lexie Adams from her dance recitals. When paint. In fact, she just backstage at one of her Tacoma, WA. asked if she likes performing finished making a lamb concerts. And, as all the Lexie started Kindergarten on stage, she quickly replied, puppet. “She’s always CCA Kids interviewed this year, where she draws, “I love to! I get to dress up creating,” her mom said. would agree, Lexie thinks writes her ABCs, reads really pretty.” And it helps that she has she’s very nice. books, “does worksheets” She also spends a lot of three grandmothers who Lexie has Crouzon syn- and goes to the library. But time outdoors. Besides keep her well stocked with drome. She has had three her favorite school activities recess, she enjoys ice arts and crafts supplies! surgeries so far, and she’s are riding the bus, having skating, roller blading and Lexie and her family about to go to the doctor lunch, playing outside and riding her bike. And there’s found out about CCA to find out how many more attending movement class. always time for her pets: through a friend. Through she has to have. Through Speaking of movement, dog Patches; fish Onion; CCA, Lexie has made a lot all of the appointments, Lexie has been taking tap, and hermit crabs Speedy of friends. She and her procedures and surgeries, ballet, jazz and gymnastics and Molly. family have attended the she has been very brave, Tempe and Nashville cooperative and strong. retreats and plan to be in And that’s her advice for Hershey, PA, for next year’s other kids in her situation. retreat. “Doctors give you great care. Be brave and do what they tell you,” she said.

Lexie dancing with her buddies at the 2005 Cher’s Family Retreat ccakid 2 ccagrad meet casey deakins

eet Casey Deakins, differences, surgeries, mour newest CCA teasing, and, sometimes, Grad. Casey, who lives in low self-esteem. St. Augustine, Florida, Her advice to the younger graduated cum laude from kids is to try to ignore Pedro Menendez High stares and teasing and School last spring and is know in your heart that now enrolled in St. Johns you are a worthy human River Community College, being. She thanks God for where she plans to pursue all her friends, family and training to be a radiology teachers who respected her technician. as an individual and looked Casey had a great senior beneath the surface to get year: She played percussion to know her and her in the Falcon Regiment capabilities. Marching Band, won a She urges parents and trophy for her multimedia others to allow each person presentation at the district with disabilities to be as Future Business Leaders of independent and “normal” America, and looked beau- as possible and always to tiful for her senior prom! keep expectations for the She continues to take person high! She says, “All piano lessons and enjoys we want is a chance to hanging out with friends prove that we are capable and taking care of her people and have so much nieces and nephew. She to give! Please give us that also enjoys horseback riding chance!” Casey Deakins every chance she gets. We wish Casey best of Casey, who has Apert luck as she pursues her Syndrome, enjoys life and college studies and look is generally cheerful and forward to seeing her at enthusiastic. She has, of the retreat in Pennsylvania course, faced the same — her tenth one to attend! issues that most of CCA’s d kids have faced: facial 3 Macey and Raven, two sisters having fun on the dancefloor

meet cca big sister, raven atkins

Mom, Raven and Macey at the 2005 Retreat

y name is Raven but I still like my other I really miss her when she is activities, pool party, dinner mArielle Atkins. I classes. When I’m not at in the hospital and can’t dance, going to the movies am 12 years old, and my school I like to shop, go to wait for her to come home. and shopping. And the birthday is October 4th. I the movies and go to my When she’s home, I help resorts were really pretty. attend Sacred Heart cousins’ and friends’ my parents by changing Having Macey as a sister School, and I’m in the houses. I like going places Macey’s diapers, giving her is different because I never eighth grade. and just having fun. a bath, feeding her and knew anyone with a facial I am a cheerleader and a I have two brothers and giving her breathing disorder. Even though she member of the Beta Club. my sister, Macey. Macey treatments. has one, I still love her. I’m also in the choir. I has a facial disorder called I attended the last two This also shows me not to played volleyball in sixth Pfieffer syndrome. When CCA retreats, and the things judge others. and seventh grade, and I’m Macey was first born, I was I enjoyed most were the trying out again this year. curious and wanted to My favorite subject is math, know all about her sickness. ccasupersib 4 ccaspecial insert to the newsletterbiker of the children’s craniofacial associationnews Fall 2005 Cher — Honorary Chairperson

Jill Gorecki, Shari Green, Rob Gorecki and Marilyn Harrison; Shari and Marilyn are volunteers for CCA from First Gold Hotel. Bike winner, Russ Narzinski (left) poses with Survivor favorite, ambassador’s report Rupert Boneham winners take the bike, CA’s 2005 motorcycle Deb Keith, Tammy Van and the art craffle is over, and here’s Ness, Kevin Braden, Alan the report on the week of Gorecki, Theresa Rouse, ongratulations Russ Chip Campground during August 6 to13 in South Rhonda Hilliard, Marilyn cNarzinski of St. Louis, rally week. The next day his Dakota! This year’s raffle Harrison, Shari Green, MO. This lucky winner of cousin bought him one was a bit different because Randy Bush and Dawn the CCA WIN a BIKE 2005 more, which was the ticket we had a custom bike built Allen. Andy’s helpers, raffle is the proud owner that won Russ the one-of-a- by Porky’s Chopper Co. Dean, Don, Harold, of a first-edition Buffalo kind bike. Russ chose a out of Dayton, OH. It is the Tommy, Chopper Dave, Chip motorcycle, custom- Candy Tangerine color first edition “Buffalo Chip” Paul and Laney helped built at the Buffalo Chip for the bike and will be bike and was built live at talk up the charity to Campground by Porky’s presented with his prize the campground during prospective ticket buyers Chopper Co. in October during the week. as well. Russ bought one ticket at Biketoberfest in Daytona, FL. When we arrived, we There were lots of our booth at the Buffalo didn’t expect the large changes at the Buffalo semi-trailer “stage” that Chip Campground, but our see winners, page 6 Andy McCaslin of Porky’s hosts, Rod “Woody,” was using to showcase the Carol, Toni and Damon activity! It drew lots of Woodruff made sure we spectators interested in knew our way around. Jeff seeing what the plan was. Ice and Bonnie London, We set up our tent and her son Donny, his wife sold raffle tickets with the Donna, and Brad Bruns help of Greg Patterson, see ambassador, page 6 5 ambassador, from page 5 Woody. I’m always glad to visit our other friends, Tom assisted us with setting up Tim McGraw, Keith Kingsbury, who puts CCA our tent each day and Anderson, CCR, Toby on the big screens, and running backstage with the Keith, Steve Miller, Steve Owen and his bike wheels for the bands Queensryche and Crew, who help us with to autograph. Woody Disturbed. Most all of our raffle drawing and signed the bike and the them gave autographed everything else backstage. week’s headliners on the items to boost ticket sales, Also boosting sales were Chip’s main stage also too, thanks to Brad Coombs visits by this year’s Miller signed. Among them were who was backstage and Lite girl, Jenn Rose, and , Dickie Betts, booked the acts for from the Hawaiian Tropic modeling contest finalists, winners, from page 5 Bear Merrill, winner of the art print who also signed items for Back at the Chip, the onlookers and ticket bike could not be painted buyers. Each day, the bike and chromed on the looked better and better. premises, so Andy decided Andy even let me fabricate the winner would get to some parts to be used! choose the base color! Just Our friend, Terry Schmidt before our raffle drawing I contributed bandanas for cut off the long pony tail us to hand out and Mike of Bruce Tyrell, because Sanborn scheduled daily he promised to get it cut radio spots on all the local off on stage at an event in stations to promote our July that raised more than And another congrats purchased 30 tickets for fundraiser. goes to Randy “Bear” $100 for our bike raffle $1,000 for CCA. After On Friday, we took some that, Russ Narzinski from Merrill of Ft. Worth, TX. while out at the Buffalo time to scope out (ride) He’s the winner of a Chip Campground. St. Louis, MO, won the possibilities for next year’s bike (I just found out he beautiful canvas-transfer Way to go winners! And events. We visited our art print that was donated on behalf of all CCA kids picked out a “Candy friends at First Gold Tangerine” orange color to CCA by Harley Davidson and their families, thank Casino in Deadwood and commissioned artist, David you to all who participated for the bike!), and Randy picked up stubs and funds Merrill of Ft. Worth, TX, Uhl. Chances to win the in the raffle! for raffle tickets they had print were given to all who won the print! The sold there. A special weather held out for us donation of a canvas- most all the week, except Rob Gorecki thanks artist David Uhl transfer art print was made for storms on Wednesday to CCA by Harley Davidson night — what a week! commissioned artist, David I’m off to MMI this Uhl. Chances to win the November, (Motorcycle print were given to all who Mechanics Institute), and purchased 30 tickets for there’s no summer break at $100 while out at the that school, but if CCA Buffalo Chip Campground. goes to Sturgis in 2006, I We stopped by the gallery hope to be there to report in downtown Deadwood for you once again! so I could personally thank David. CCA Ambassador, Rob Gorecki 6 more friends become family

n July, prior to Rally week in iSturgis, our good friend Mike Sanborn, held a Charity Dart Tournament at The Clock Tower Lounge in Rapid City to boost raffle ticket sales. And Bruce Tyrrell, longhaired who built that custom bike? friend of CCA, challenged the crowd to raise more than $1,000 in ticket sales. If they did, he’d let someone cut his hair on stage before the bike • Designs Now ndy McCaslin, a drawing. They did — in fact • Headwinds Headlights ayoung entrepreneur in they raised $3,064 for CCA! • Hog Halter Inc. the custom bike world who CCA Ambassador to Sturgis, • J&P Cycles runs Porky’s Chopper Co. Rob Gorecki did the honors, • Jim’s Body Shop in Dayton, OH, was cutting off Bruce’s long ponytail, • Karyacan enlisted by Rod “Woody” which was later donated to • Lincoln Electric Woodruff to build the Locks of Love. (Bruce has • Mayhabs Hot Rods first-edition Buffalo Chip known Rob for years, having met • Mr. Lucky Seats custom motorcycle. him while working backstage at • Porky’s Chopper Co. Andy’s brainchild was to the Chip.) Bruce is quite a guy! • Russell Fittings build the bike live on the Thank you to all who supported and participated in the • Showride Images grounds for all to see. effort, including Bruce, Mike, The Clock Tower Lounge, • Spyke Starters Together, Andy and Woody The Legendary Buffalo Chip, Fisher Beverage, Eagle • Tower Machine decided that the project Beverage, Harley Davidson, Ramada Inn, • Vance & Hines Racing should benefit CCA. and Cheers Hills Vending. Welcome to the family! Andy pounded the Andy, Dean and Porky’s pavement for support Chopper Co. would also and found help from the like to thank everybody at back-to-back industry in Ohio, South the Buffalo Chip, staff and leading the Dakota and parts beyond. vendors, as well as Mike The following businesses Breeding, Tommy pack donated or discounted Cooper, Harold Clifton, nce again, the parts for building the bike: Paul Dicory, Mike Dale family of • A to Z Painting Mahab, Tom Manshine, o Horseheads, NY, led the • Aesthetic Finishers Tim and Colleen Marsh, pack of CCA families and • American Industrial Elton Parrish, Don friends selling raffle tickets. They sold almost 400 tickets Maintenance Strouth and Taiwan and raised about $2,000! • Arlen Ness Tommy. Tim McGraw, one of the headliners at the Chip, where • Avon Tire And thanks to the many the raffle drawing took place, autographed a CD, which • Baker Drivetrane others who we were was sent to the Dales for their repeat accomplishment. • Blair LLC fortunate enough to meet Thanks again Kristine, George, Jeremy and Tommy Dale, • Carl’s Speed Shop but just didn’t get their and to all of our families and friends who helped sell! • Crane Cams name! • Custom Gunsmithing and Engraving 7 sturgis 2005

8 Jylian, from page 1 nothing about medical procedures, and we could not breathe on her desperately wanted to be own. John touched her told that there was an easy chest briefly, and she was way to “fix” all of Jylian’s rushed to the NICU. Our abnormalities. We were family and friends waited emotionally exhausted, yet anxiously in the hall, but as hopeful and so proud of the tiny bed rushed by, our precious girl. In one everyone knew something week, I felt as if one was not right. hundred years had passed. I soon woke from I was in a new world, and sedation, and I was I was instantaneously a informed that Jylian was different person. born with a multitude of Jylian was transported to “anomalies.” The situation Cook Children’s Hospital John, Kendall and Jylian Bilbow was surreal, and we were soon after her birth. She so sad and confused. The needed a tracheostomy in colostomy. At just under fed through the G-tube next few days were touch order to be able to breathe one month old, Jylian was today). and go, and the doctors on her own. On the able to have the tra- Finally, on May 20, 2002, knew that Jylian’s condition scheduled day of her cheostomy procedure we we were able to bring was extremely rare. Jylian’s surgery, her surgeons had been waiting for. I was Jylian Shay home! We had jaw was recessed, and it discovered a tear in Jylian’s able to HOLD my sweet already made arrangements was blocking her airway. intestine. She underwent baby for the very first time. to meet with Dr. Kenneth Her skull was abnormally emergency exploratory Jylian was now able to Salyer for Jylian’s initial shaped, her fingers and surgery, and she needed a leave the NICU, and we craniofacial visit and skull toes were very long and temporary colostomy. We moved upstairs to the scans on May 23. We thin, and there were felt as if we had been Transitional Care Unit. John had begun to research concerns about her heart knocked to the ground and I literally lived in the craniofacial conditions and and vertebrae as well. We again, but we pushed on tiny room with Jylian, and treatments while we were were not able to hold and immediately learned we learned how to care for staying in the hospital and Jylian. We knew practically how to care for the her trach. We were instant- were confident that Dr. ly comfortable with our Salyer’s craniofacial team new responsibilities as her at Medical City Dallas (medical) caregivers, and would be able to give us we even amazed each help and hope. other. Looking back, we Jylian’s abnormally know that God was carry- shaped skull was officially ing us through this time. diagnosed as craniosynos- We also relied on each tosis, and on September other for the emotional 13, 2002 her first cranial strength to make it through surgery was performed in each day. Jylian had anoth- Dallas. Because of Jylian’s er abdominal surgery at 8 upper spinal anomalies, her weeks old to close her surgeons removed much of colostomy, and she was the base of her skull and given a G-button for feed- part of her C-1 (cervical ing at this time (she is still spine). She lost a lot of see Jylian, page 10 9 Jylian, from page 9 were heavy. Jylian’s sweet months, and we began to blood, and she was in the spirit and bubbly personality “cap” her trach. We had PICU for about six days. We carried us through! to go through several sleep felt relief to know that they Surgeries became less studies and failed attempts had given her brain plenty frequent, and we had more to remove the trach. of room to grow. Four time to realize the need for We had always been months later, Jylian’s networking with other comfortable with the trach, second skull surgery was families and raising aware- and we knew that we done. This time, her ness of craniofacial condi- couldn’t let this difficult surgeons worked on the tions. We also felt called to part of our journey lower front of her skull, including use our resources to help our spirits. In God’s time, her brow-line. We began to raise money for children when we were least learn just how strong-willed who do not have access to expecting it, Jylian’s trach our sweet Jylian was. Her craniofacial surgeons and came out successfully! This adapted as if they weren’t little eyes swelled shut, but quality care. I truly believe was a huge step for Jylian! even there. John and I she learned to stretch her that Jylian has touched Our time of celebration turned the devices every- mouth open very wide in lives, and we are committed became short-lived. We day, eventually advancing order to “pull” her eyes to helping her make a have learned to “expect the her lower jaw significantly. open. We would laugh difference. I created Jylian’s unexpected,” and we were She would wear the devices because it was so cute, and website (www.jylian.com), knocked off of our feet for almost six months. our giggles made her laugh which has helped share her again when we learned that Jylian’s first year was until her eyes closed again! story and information about Jylian’s spinal anomalies filled with surgeries, but It was precious. her surgeons and the were severe, and her spinal throughout this time, we Our next step was the craniofacial organizations cord was potentially at risk. were hopeful that we jaw distraction. This that mean so much to us. Jylian needed surgery to would see her gain procedure would advance Jylian’s third cranial fuse her two upper strength. Her physical Jylian’s lower jaw, so that surgery was done just after vertebrae to the base of progress was very slow. We she would no longer her second birthday, and her skull. This would require were beginning to learn require the trach. We had she recovered quickly. that she wear a halo for that Jylian’s syndrome was yet to hear Jylian’s sweet Home therapy resumed, three to four months. We more severe than we had laughs (and cries), and we Jylian was doing well, had our brief moment of hoped, and it affected were looking forward to and we were anxiously disappointment, and then much more than her the possibility of life preparing for our very first we began to look forward craniofacial bones alone. without the trach. The CCA Retreat. At the 2004 to the surgery that would John and I have remained external jaw devices were Tempe CCA Retreat, John hopefully bring stability to hopeful and positive from cumbersome, but she and I felt a sense of peace our baby girl. day one. There were (and and normalcy that we had We learned that Jylian are) situations in which never experienced. We has an extremely rare one or both of us “break were able to let go of our Marfanoid Craniosynostosis down,” but we have burdens and simply have syndrome, which is a always been able to see the fun with other families who connective tissue as well greatness and the miracles knew exactly what those as a craniofacial disorder. in Jylian’s life. At this burdens were all about. It There are only about 20 particular time, as we were was an amazing time, and other people in the entire coming to realize how sig- we knew we never wanted world that have been diag- nificantly Jylian’s hypotonia to miss a CCA Retreat! nosed with this particular (low muscle tone) was Jylian’s jaw devices had syndrome. We now know affecting her life, our hearts been off for more than six more about treatment for 10 At the 2004 Tempe CCA Retreat, John and I felt a

sense of peace and normalcy that we had never

experienced. We were able to let go of our burdens “and simply have fun with other families who knew exactly what those burdens were all about. It was an

amazing time, and we knew we never wanted to miss

a CCA Retreat!

Jylian’s heart anomalies, Jylian’s spinal fusion will and we’re grateful for our take place soon, and we are 2006 Retreat Info new information. prepared. We have been Although much of this blessed with an amazing Registration is open for the 2006 Cher’s year has been a waiting support system, including ” period for the spinal fusion, friends, family and our Annual Family Retreat to be held in Hershey, Jylian’s made some huge church family. Jylian inspires Pennsylvania June 22–25th. Contact Annie strides. She began home- us everyday, and I don’t bound pre-school, and it’s know who I would be with- Reeves at 800-535-3643 or email her at absolutely amazing to out her. When we began to watch her learn. She LOVES plan our family, I never [email protected] for a registration school, and she is so bright! would have imagined that form and reservation information. Due to Jylian loves the “Wiggles,” we would be faced with so and she doesn’t need to be much adversity. Life is a gift, space restrictions at the hotel, rooms will be on her feet to do the moves and it’s not easy. God has to EVERY “Wiggles” song! given us peace and joy in limited to immediate family members She loves her dolls, music the face of the adversity. (parents/siblings) of a child or adult with a and her new “princess” Jylian is not her fragile room! Through the miracle body. She is the essence of craniofacial condition. If you have additional of adoption, our Jilly Bean strength and determination. will also be a big sister in We look at Jylian and see family members who wish to attend, contact the months to come. We what life is really all about. Annie for details. can’t wait! 11 donors, april 1, 2005 through september 30, 2005* save those cells! Gifts from CCA Friends Corporate / ($100 +) lease save your old cell phones for CCA Individuals Foundation Gifts as well as empty laser disk and ink Amye M. Adkins p Ralph Aurelia cartridges from your computer printers. CCA Supporters Joseph Baniecki CCA Corporate / (up to $100) Bill Buchanan Foundation Friends CCA can turn those in for rebates! Just send Jimmy & Beverly Butera (up to $1,000) Sharon Allbright them to us. If you think you can fill a whole Chuck Bates Larry Carpenter Mark & Mary Jane William Conrad Albertsons (Purchases box, call us and we will send you a labeled, Baumgartner Diana Critchlaw Percentage Incentives) Ted Bickley Courtney Dabbs America’s Charities (Employee UPS pre-paid collection box. It’s that easy. William & Arlene Blumenthal George Dale Giving Funds Management) Mildred Bonneau Dede & Darin Dankelson American Express Employee David & Yvonne Boon Anthony & Sandra Deakins Giving Angelic Burns Philip & Tara Eve Covenant Medical Group be remembered… Jennifer Charney Jill Gorecki Dell Employee Giving John Chiconides Renee Grasty Funding Factory (Rebates Harold & Gail Choen Reynold Gravina Program) bequest! Jane Crymble Dennis Hamilton Global Impact (Employee Giving Gerald & Ruth Dankelson Roni Heinze Funds Management) Laurie DeCarlo John & Arleen Heirty A D Hill Landscaping Materials s you consider your year-end giving and a Amy Dibattista Elizabeth Horan HP Employee Charitable Giving Roger & Carolyn Lamb Program 2005 income tax savings, this is also a Richard Dinsdale a Lindy Eriksen Robyn LaPiana Hiznay & Associates good time to consider long-term tax savings. Jerry Lynn & Dianne Erwin Rochelle Lowenstein Kroger (Purchases Percentage Marlane & David Fitzgerald Peggy J. McDannel Incentives) About 50 percent of what you leave behind at Charles Parrot Lockheed Martin Employee John & Carrie Follett the time of death goes for estate tax. That’s Jennifer G. Andrea Richard Giving Casey Gore Jennifer Sbranti Priceless Ponies higher than income tax! Bruce Scheibe SBC Employee Giving J. Thomas & Linda L. Gott It pays to do some advance planning. Kevin Eugene Haugh Fred Seitz Safeway Inc. (Purchases Iona Henderson Daniel Servaty Percentage Incentives) When you consult an attorney or investment A.E. Karpin Steven Sharp Sarah Hall Productions Kathryn Kemp David Turner The Prudential Foundation professional regarding your will and assets, we Laura Kern C.M. & Leila Wiley Matching Gifts hope you’ll consider a charitable bequest in Jess J. Leyva Tweezerman Corp. Edward Levy United Way of Tucson & your will to CCA. Such a bequest not only CCA Extended Family Southern Arizona James Macaulay ($500 +) benefits CCA, but it also saves you tax dollars. Andrew Martin United Way of Fresno County Angela Maubach Christine Barrett (Directed Donations) Lisa McInnis Martha Brown United Ways of New England Don Meier Pauline Ridiker (Directed Donations) Elizabeth Moulton Courtney Vincent Wellpoint Foundation cca annual giving Mina Mulvey (Employee Giving/Matching Janell E. Nelson Funds Management) campaign Ron Nierman CCA Sponsor World Reach, Inc. (Employee Janet Novick ($1,000 +) Giving Funds Management) Candace S. Powell Fred & Judi Freeman hen you receive our annual funds appeal Kim Romeo Jane L. Goodman CCA Corporate / Daniel Samborski letter, you’ll read the amazing story of Conor McGann w Paula Scheffman Foundation Sponsors John Moulton and the struggles his family Martin Schweinhart ($1,000-$5,000) Michael Snow dealt with as he grew up with Apert syndrome CCA Benefactor Independent Order of Odd Christopher Stokes ($5,000 +) Fellows – Century Lodge in a time when CCA was not around. John J. Sullivan No. 492 Tamey Taha Today, CCA is making a difference for many East Bay Community Ricky Thomas Foundation Maria Torres children and their families, and through your Charles Krieger Foundation Edgar & Joan Vallar Memorials / Wal-Mart donation, you can too. Please think about Don Wagaman In-Honor Gifts JoAnn Witt –contributing to the best of your ability. Gifts of Telisa J. Woulard Angelic Burns CCA Corporate / cash, stocks, real estate, trusts and annuities will Cher Birthday Bash William Conrad Foundation Partners allow CCA to continue to provide programs and ($5,000 or more) Dede & Darin Dankelson services and will allow you a tax advantage. John & Arleen Heirty Kathryn W. Kemp Biedenharn Foundation If you do not receive our letter, you can access Peggy McDannel Wells Fargo Smiley Face Campaign it at CCAKids.com, where you can also hear John play the piano. * Listed are monetary donations since last September. We are extremely grateful for these and all prior donations, raffle ticket purchases, fundraisers and in-kind donations not recorded here. 12 We do our best to accurately recognize donors. If you notice an error, please let us know. crawford’s ccaprograms walk for cca and services in the spotlight pecial thanks to Mary and Parker Families of craniofacial patients often call CCA to seek S Crawford, their mom emotional support, discuss problems and identify Lisa and everyone involved resources. Through our database, we are able to network in their Crawford’s Walk families with support groups and/or others who have for CCA. Even with a small similar conditions and experiences. We also keep a list turnout, their efforts raised of helpful resources and are always willing to listen and over $300 for Children's offer emotional support to family members who need a Craniofacial Association! shoulder upon which to lean. For further assistance or Thanks! information call Annie Reeves at 800-535-3643 or email [email protected] If you are registered with Schoolpop programs we offer to benefit CCA, please notify us at the • Toll-free hotline • www.ccakids.com CCA office: 800-535-3643. • List of qualified Web site physicians • Annual Cher’s Family • Information and support Retreats download the newsletter • Educational booklets • Public awareness • Financial assistance • Family networking f you are currently receiving the newsletter by mail, but • CCA Network, a • Advocacy iwould rather download it from CCAKids.com, let us quarterly newsletter know by sending your email to [email protected]. The online version is in full color!

year-end contributions 2005-2006 calendar ash donations to CCA can be made by credit card of events canytime through December 31st. The IRS considers the date the donation was charged to your card as the date event contact contribution date even though the bill won’t come due until January. December 10 CCA Midwest Holiday Party [email protected]

Noon to 2:00 p.m. 262.781.0056 coming soon (light refreshments served) 800.535.3643 ur new online Web store will be December 10 CCA Dallas Holiday Party [email protected] oavailable soon on our Web site. Watch 214.570.9099 for lots of great ideas for holiday gift giving, 800.535.3643 which will also serve to spread awareness June 22–25 16th Annual Cher’s [email protected] of CCA! Family Retreat 214.570.9099 www.ccakids.com Hershey, PA 800.535.3643 13 family and friends your fair share raising funds Did you know…

hank you, Century Lodge #492 Independent Order hen the United Way Campaign at work asks you t of Odd Fellows. Once again, they’ve stepped up and w to contribute your fair share or any amount, you raised $1,000 for Children’s Craniofacial Association. can designate that the funds go to Children’s Craniofacial The Odd Fellows is an international, fraternal benevolent Association. CCA is not a United Way beneficiary agency society, and the award-winning Century Lodge #492 in but directed donations may be made to any 501(c)3 Carpenterville, IL, boasts many “biker” brothers. They nonprofit organization you request. That way you will be became supporters of CCA after being introduced to helping your workplace meet their campaign goals as well Rob Gorecki during our annual motorcycle raffle at the as this important cause! Thank you! Black Hills Rally in Sturgis, SD. Thank you Odd Fellows for making a difference for CCA kids! And a thank you goes to CCA Mom, Jennifer Guerra If you have not yet submitted your and Katz’s Deli and Bar of Houston, TX. They managed recipes for our CCACookbook, please to raise $500 against incredible adversity during the past two months of weather and refugee/evacuee chaos! get them to us by mail or email asap! Jennifer has twin daughters, Natalie and Olivia. Natalie was born with Pfeiffer syndrome. Jennifer submitted CCA as a recipient of Katz’s “Benefit Table” funds. The restau- teach your children well — rant gives 10% of the meals served at this special table for give a meaningful gift this a month and they were kind enough to post CCA as ben- eficiary for two consecutive months. holiday season Thanks again, Jennifer, for thinking to help others when an’t decide what to card that will acknowl- you already have so much on your plate! And thank you, c give those special edge your generous gift Katz’s, and all who ate there! people on your list who on their behalf. What a have everything? wonderful way to honor Consider a gift of $25 or someone, help your financial assistance more to CCA in honor charity and teach of a relative, your friend or children o you travel to receive quality medical care? If you d business the true do, and need financial help, CCA has a financial associate. mean- We’ll then ing of assistance program that will help with food, travel send the and/or lodging. Call CCA for an application at 800-535- them a season. 3643. All we ask is that you apply at least four to six

weeks prior to your next trip.

14 chair, from page 1 In early October, U.S. regional volunteers Representative Mike Ross Families deal with a gamut of Arkansas introduced ublic awareness about craniofacial conditions is of feelings and emotions, legislation to guarantee pimportant on several levels. It’s important that families and they also seek answers insurance coverage for find quality medical care, that healthcare professionals to their questions. They craniofacial patients. are aware of the special medical and emotional needs of turn to family, friends and This proposed legislation medical professionals for was introduced because children and adults with facial differences, that the public understanding and insurance companies will understands and accepts facial differences and that support. They also turn to sometimes label needed individuals with facial difference are accepted. CCA. Some CCA programs reconstructive care as CCA has formed a network of regional volunteers across and services are designed “cosmetic” and deny the country who have banded together in an effort to to provide parents, coverage for this or other educate and inform the public. The regional volunteers regardless of income level, reasons. The Reconstructive and CCA will now turn to local areas to recruit volunteers with immediate support Surgery Act of 2005 or HR who will distribute educational materials throughout their and valuable information in 4022 seeks to guarantee communities. the early stages. Those that insurance companies If you would like to help educate your community and services include: cover medically necessary take part in this national awareness effort, call or email CCA • Toll-free physician referral care. Program Director, Annie Reeves at 800-535-3643 or • Toll-free support line Approximately 100,000 [email protected]. • Craniofacial Syndrome children are born each booklets year with some degree of • Advocacy to ensure craniofacial disfigurement. annie’s bundle of joy quality care In addition, both children • Annual family retreat and adults can develop CA welcomes Katrina and Rita captured such conditions through cProgram Director, the entire media’s atten- trauma and disease. This Annie Reeves back tion. Most Americans now legislation will help these from maternity leave have vivid images of the children and adults. for the birth of her destruction and many have Families and friends, it’s son, Connor Glen. responded with kindness time to mobilize. Go to the Annie was disap- and financial support. For following Web site for more pointed to miss our CCA, each September has information on this very Annual Family been designated craniofa- important piece of legisla- Retreat at the end of cial awareness month, and tion and to find out what our goal is to capture you can do: www.aica- June, but Connor week or so later on July 7, greater media attention in advocates.blogspot.com. was almost due at the 2005, weighing in at 8lbs, the ensuing years. We time. He was born just a 8oz and 21 inches. need people’s financial sup- Robert Vargas, Chairman port to continue providing Board of Directors the level of services that are necessary. We need to educate the general public of our vision, “…a world where all people are accepted for who they are, not how they look.” 15 Honorary Chairperson: Cher cheers Board of Directors: for volunteers! Robert Vargas, CHAIR, Abilene, TX Tim Ayers, Washington, DC George Dale, Corning, NY 3 Tony Davis, Tuscaloosa, AL Deborah DeLay, Fort Collins, CO ou’ve seen his name mentioned often in Donna Gossett, Cullman, AL your newsletter for a number of events. Heather Lermont-Pape, Indianapolis, IN Greg Patterson has been a dedicated Dan Paulson, Fargo, ND volunteer for CCA for more than three years. Rose Seitz, Youngstown, OH Bill Sims, CPA, Dallas, TX Although Greg volunteers in many Robin Williamson, Carrollton, TX capacities, he’s best known for his contribu- Stephen Wright, San Francisco, CA tion to the annual Sturgis motorcycle raffle. Medical Advisory Board: In addition to selling tickets, he has spent Jeffrey Fearon, MD, CHIEF ADVISOR numerous hours on the road transporting CCA Network Editor: Kelly Liszt the raffle motorcycle and CCA equipment CCA Network Design and each year. Greg has generously donated all Production: fuel and travel expenses, not to mention Robin Williamson, Williamson his personal time. Creative Services, Inc. Greg also helps in the office with Executive Director: Charlene Smith the quarterly newsletter and lends his Program Director: photographic skills at various CCA events. Annie Reeves Greg is truly a special guy who always helps Development Director: out when we ask. Three Cheers for Greg! Jill Gorecki Greg Patterson Administrative Assistant: Kelly Silverman Business Manager:

NONPROFIT ORG Cathy Evans children’s craniofacial association U.S. POSTAGE 13140 Coit Road, Suite 307 • Dallas, TX 75240 PAID The views and opinions expressed DALLAS, TX in this newsletter are not necessarily PERMIT NO. 555 those of CCA.

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