lessonslearned

the recent nationaltragedies caused byhurricanes Katrina and Ritahave presented Americanswith a few life lessons.People of all economiclevels were forced out oftheir homes, some withgreater haste than others.Some have alreadyreturned home, and somemay never go back. Manyaffected will be able toadjust to the economicburden and psychologicalhurt that they haveexperienced; many will not.

As this panoramaunfolded in the media Isaw a parallel to CCA andthe families affected by acraniofacial condition. First, there is an immediateimpact on the family h-aving a newborn with acraniofacial condition.

ccanetwork

empowering and giving hope to facially disfigured individuals and their families

newsletter of the children’s craniofacial association Cher — honorary chairperson fall 2005

insidecca kid

lexie adams . . . . . . . . . . 2

cca grad

casey deakins. . . . . . . . . 3

cca supersib

raven atkins . . . . . . . . . . 4

2005 biker news . . . 5-8

2006 retreat info . . . . 11

fundraising

news . . . . . . . . 12-14

cca programs . . . . . . . 13

calendar of events . . . 13

regional volunteers. . . 15

3 cheers . . . . . . . . . . . 16

see chair, page 15

on March 17, 2002, we headed to the hospital towelcome our first baby daughter into the world. Johnand I always knew that raising a family was our first priori-ty. I had been blessed with a happy healthy pregnancy, andmy labor was to be induced on St. Patrick’s Day! The paincaused by twelve hours of “natural” labor was almostunbearable for me, but John vividly remembers how themood of anticipation in the room suddenly changed to thatof worry. Jylian’s heart rate was dropping drastically, and Iwas soon rushed to the operating room for an emergencyC-section. John could only watch through a window in theoperating room, but herecalls the reaction ofthe medical staff andthe sense of urgencythat filled the room.Jylian let out a faint crybut had to be immedi-ately intubated. She

see jylian, page 9

Jylian Bilbow

jylian’sstoryby Kendall Bilbow

introducing our latestCCA Kid, six-year-oldLexie Adams fromTacoma, WA.

Lexie started Kindergartenthis year, where she draws,writes her ABCs, readsbooks, “does worksheets”and goes to the library. Buther favorite school activitiesare riding the bus, havinglunch, playing outside andattending movement class.

Speaking of movement,Lexie has been taking tap,ballet, jazz and gymnastics

classes for the past two anda half years. She really enjoysher dance recitals. Whenasked if she likes performingon stage, she quickly replied,“I love to! I get to dress upreally pretty.”

She also spends a lot oftime outdoors. Besidesrecess, she enjoys iceskating, roller blading andriding her bike. And there’salways time for her pets:dog Patches; fish Onion;and hermit crabs Speedyand Molly.

meet lexie adams

Lexie Adams and her mom

2

Lexie is really creative andloves to color, cut andpaint. In fact, she justfinished making a lambpuppet. “She’s alwayscreating,” her mom said.And it helps that she hasthree grandmothers whokeep her well stocked witharts and crafts supplies!

Lexie and her familyfound out about CCAthrough a friend. ThroughCCA, Lexie has made a lotof friends. She and herfamily have attended theTempe and Nashvilleretreats and plan to be inHershey, PA, for next year’sretreat.

She also had theopportunity to meet Cherbackstage at one of herconcerts. And, as all theCCA Kids interviewedwould agree, Lexie thinksshe’s very nice.

Lexie has Crouzon syn-drome. She has had threesurgeries so far, and she’sabout to go to the doctorto find out how many moreshe has to have. Through all of the appointments,procedures and surgeries,she has been very brave,cooperative and strong.And that’s her advice forother kids in her situation.“Doctors give you greatcare. Be brave and do whatthey tell you,” she said.

ccakidLexie dancing with herbuddies at the 2005Cher’s Family Retreat

3

meet Casey Deakins,our newest CCAGrad. Casey, who lives inSt. Augustine, Florida,graduated cum laude fromPedro Menendez HighSchool last spring and isnow enrolled in St. JohnsRiver Community College,where she plans to pursuetraining to be a radiologytechnician.

Casey had a great senioryear: She played percussionin the Falcon RegimentMarching Band, won atrophy for her multimediapresentation at the districtFuture Business Leaders ofAmerica, and looked beau-tiful for her senior prom!

She continues to takepiano lessons and enjoyshanging out with friendsand taking care of hernieces and nephew. Shealso enjoys horseback ridingevery chance she gets.

Casey, who has ApertSyndrome, enjoys life andis generally cheerful andenthusiastic. She has, ofcourse, faced the sameissues that most of CCA’skids have faced: facial

differences, surgeries,teasing, and, sometimes,low self-esteem.

Her advice to the youngerkids is to try to ignorestares and teasing andknow in your heart thatyou are a worthy humanbeing. She thanks God forall her friends, family andteachers who respected heras an individual and lookedbeneath the surface to getto know her and hercapabilities.

She urges parents andothers to allow each personwith disabilities to be asindependent and “normal”as possible and always tokeep expectations for theperson high! She says, “Allwe want is a chance toprove that we are capablepeople and have so muchto give! Please give us thatchance!”

We wish Casey best ofluck as she pursues hercollege studies and lookforward to seeing her atthe retreat in Pennsylvania— her tenth one to attend!

Casey Deakins

d

ccagradmeet casey deakins

4

my name is RavenArielle Atkins. Iam 12 years old, and mybirthday is October 4th. Iattend Sacred HeartSchool, and I’m in theeighth grade.

I am a cheerleader and amember of the Beta Club.I’m also in the choir. Iplayed volleyball in sixthand seventh grade, and I’mtrying out again this year.My favorite subject is math,

but I still like my otherclasses. When I’m not atschool I like to shop, go tothe movies and go to mycousins’ and friends’houses. I like going placesand just having fun.

I have two brothers andmy sister, Macey. Maceyhas a facial disorder calledPfieffer syndrome. WhenMacey was first born, I wascurious and wanted toknow all about her sickness.

ccasupersib

Macey and Raven, two sisters having fun on the dancefloor

meet cca bigsister, raven atkins

I really miss her when she isin the hospital and can’twait for her to come home.

When she’s home, I helpmy parents by changingMacey’s diapers, giving hera bath, feeding her andgiving her breathingtreatments.

I attended the last twoCCA retreats, and the thingsI enjoyed most were the

activities, pool party, dinnerdance, going to the moviesand shopping. And theresorts were really pretty.

Having Macey as a sisteris different because I neverknew anyone with a facialdisorder. Even though shehas one, I still love her. This also shows me not tojudge others.

Mom, Raven and Macey at the 2005 Retreat

cCA’s 2005 motorcycleraffle is over, and here’sthe report on the week ofAugust 6 to13 in SouthDakota! This year’s rafflewas a bit different becausewe had a custom bike builtby Porky’s Chopper Co.out of Dayton, OH. It is thefirst edition “Buffalo Chip”bike and was built live atthe campground duringthe week.

When we arrived, wedidn’t expect the largesemi-trailer “stage” thatAndy McCaslin of Porky’swas using to showcase theactivity! It drew lots ofspectators interested inseeing what the plan was.We set up our tent andsold raffle tickets with thehelp of Greg Patterson,

Deb Keith, Tammy VanNess, Kevin Braden, AlanGorecki, Theresa Rouse,Rhonda Hilliard, MarilynHarrison, Shari Green,Randy Bush and DawnAllen. Andy’s helpers,Dean, Don, Harold,Tommy, Chopper Dave,Paul and Laney helpedtalk up the charity toprospective ticket buyers as well.

There were lots ofchanges at the BuffaloChip Campground, but ourhosts, Rod “Woody,”Carol, Toni and DamonWoodruff made sure weknew our way around. JeffIce and Bonnie London,her son Donny, his wifeDonna, and Brad Bruns

congratulations RussNarzinski of St. Louis,MO. This lucky winner ofthe CCA WIN a BIKE 2005raffle is the proud ownerof a first-edition BuffaloChip motorcycle, custom-built at the Buffalo ChipCampground by Porky’sChopper Co.

Russ bought one ticket atour booth at the Buffalo

Chip Campground duringrally week. The next day hiscousin bought him onemore, which was the ticketthat won Russ the one-of-a-kind bike. Russ chose aCandy Tangerine color for the bike and will bepresented with his prize in October duringBiketoberfest in Daytona, FL.

ccabikernewsspecial insert to the newsletter of the children’s craniofacial association Fall 2005Cher — Honorary Chairperson

see ambassador, page 6

see winners, page 6

5

winners take the bike, and the art

ambassador’s reportBike winner, Russ Narzinski (left) poses with Survivor favorite, Rupert Boneham

Jill Gorecki, Shari Green, Rob Gorecki and Marilyn Harrison; Shariand Marilyn are volunteers for CCA from First Gold Hotel.

And another congratsgoes to Randy “Bear”Merrill of Ft. Worth, TX.He’s the winner of abeautiful canvas-transferart print that was donatedto CCA by Harley Davidsoncommissioned artist, DavidUhl. Chances to win theprint were given to all who

purchased 30 tickets for$100 for our bike rafflewhile out at the BuffaloChip Campground.

Way to go winners! Andon behalf of all CCA kidsand their families, thankyou to all who participatedin the raffle!

assisted us with setting upour tent each day andrunning backstage with thebike wheels for the bandsto autograph. Woodysigned the bike and theweek’s headliners on theChip’s main stage alsosigned. Among them wereShinedown, Dickie Betts,

Tim McGraw, KeithAnderson, CCR, TobyKeith, Steve Miller,Queensryche andDisturbed. Most all ofthem gave autographeditems to boost ticket sales,too, thanks to Brad Coombswho was backstage andbooked the acts for

Woody. I’m always glad tovisit our other friends, TomKingsbury, who puts CCAon the big screens, andSteve Owen and hisCrew, who help us withour raffle drawing andeverything else backstage.

Also boosting sales werevisits by this year’s MillerLite girl, Jenn Rose, andfrom the Hawaiian Tropicmodeling contest finalists,who also signed items foronlookers and ticketbuyers. Each day, the bikelooked better and better.Andy even let me fabricatesome parts to be used! Our friend, Terry Schmidtcontributed bandanas forus to hand out and MikeSanborn scheduled dailyradio spots on all the localstations to promote ourfundraiser.

On Friday, we took sometime to scope out (ride)possibilities for next year’sevents. We visited ourfriends at First GoldCasino in Deadwood andpicked up stubs and fundsfor raffle tickets they hadsold there. A specialdonation of a canvas-transfer art print was madeto CCA by Harley Davidsoncommissioned artist, DavidUhl. Chances to win theprint were given to all whopurchased 30 tickets for$100 while out at theBuffalo Chip Campground.We stopped by the galleryin downtown Deadwoodso I could personally thank David.

Back at the Chip, thebike could not be paintedand chromed on thepremises, so Andy decidedthe winner would get tochoose the base color! Justbefore our raffle drawing Icut off the long pony tailof Bruce Tyrell, becausehe promised to get it cutoff on stage at an event inJuly that raised more than$1,000 for CCA. Afterthat, Russ Narzinski fromSt. Louis, MO, won thebike (I just found out hepicked out a “CandyTangerine” orange colorfor the bike!), and RandyMerrill of Ft. Worth, TX,won the print! Theweather held out for usmost all the week, exceptfor storms on Wednesdaynight — what a week!

I’m off to MMI thisNovember, (MotorcycleMechanics Institute), andthere’s no summer break atthat school, but if CCAgoes to Sturgis in 2006, Ihope to be there to reportfor you once again!

CCA Ambassador, Rob Gorecki

winners, from page 5

ambassador, from page 5

6

Bear Merrill, winner of the art print

Rob Gorecki thanks artist David Uhl

andy McCaslin, ayoung entrepreneur inthe custom bike world whoruns Porky’s Chopper Co.in Dayton, OH, wasenlisted by Rod “Woody”Woodruff to build thefirst-edition Buffalo Chipcustom motorcycle.

Andy’s brainchild was tobuild the bike live on thegrounds for all to see.Together, Andy and Woodydecided that the projectshould benefit CCA.

Andy pounded thepavement for support and found help from theindustry in Ohio, SouthDakota and parts beyond.The following businessesdonated or discountedparts for building the bike:

• A to Z Painting• Aesthetic Finishers• American Industrial

Maintenance• Arlen Ness• Avon Tire• Baker Drivetrane• Blair LLC• Carl’s Speed Shop• Crane Cams• Custom Gunsmithing

and Engraving

• Designs Now• Headwinds Headlights• Hog Halter Inc.• J&P Cycles• Jim’s Body Shop• Karyacan• Lincoln Electric• Mayhabs Hot Rods• Mr. Lucky Seats• Porky’s Chopper Co.• Russell Fittings• Showride Images • Spyke Starters• Tower Machine• Vance & Hines RacingAndy, Dean and Porky’s

Chopper Co. would alsolike to thank everybody atthe Buffalo Chip, staff andvendors, as well as MikeBreeding, TommyCooper, Harold Clifton,Paul Dicory, MikeMahab, Tom Manshine,Tim and Colleen Marsh,Elton Parrish, DonStrouth and TaiwanTommy.

And thanks to the manyothers who we werefortunate enough to meetbut just didn’t get theirname!

more friendsbecome family

in July, prior to Rally week inSturgis, our good friend MikeSanborn, held a Charity DartTournament at The Clock TowerLounge in Rapid City to boostraffle ticket sales.

And Bruce Tyrrell, longhairedfriend of CCA, challenged the crowd to raise more than$1,000 in ticket sales. If they did, he’d let someone cut hishair on stage before the bikedrawing. They did — in factthey raised $3,064 for CCA!

CCA Ambassador to Sturgis,Rob Gorecki did the honors,cutting off Bruce’s long ponytail,which was later donated toLocks of Love. (Bruce hasknown Rob for years, having methim while working backstage atthe Chip.) Bruce is quite a guy!

Thank you to all who supported and participated in theeffort, including Bruce, Mike, The Clock Tower Lounge,The Legendary Buffalo Chip, Fisher Beverage, EagleBeverage, Black Hills Harley Davidson, Ramada Inn,and Cheers Hills Vending. Welcome to the family!

7

who built that custom bike?

back-to-backleading thepack

once again, the Dale family ofHorseheads, NY, led thepack of CCA families andfriends selling raffle tickets. They sold almost 400 ticketsand raised about $2,000!

Tim McGraw, one of the headliners at the Chip, wherethe raffle drawing took place, autographed a CD, whichwas sent to the Dales for their repeat accomplishment.Thanks again Kristine, George, Jeremy and Tommy Dale,and to all of our families and friends who helped sell!

8

sturgis 2005

colostomy. At just underone month old, Jylian wasable to have the tra-cheostomy procedure wehad been waiting for. I wasable to HOLD my sweetbaby for the very first time.

Jylian was now able toleave the NICU, and wemoved upstairs to theTransitional Care Unit. Johnand I literally lived in thetiny room with Jylian, andwe learned how to care forher trach. We were instant-ly comfortable with ournew responsibilities as her(medical) caregivers, andwe even amazed eachother. Looking back, weknow that God was carry-ing us through this time.We also relied on eachother for the emotionalstrength to make it througheach day. Jylian had anoth-er abdominal surgery at 8weeks old to close hercolostomy, and she wasgiven a G-button for feed-ing at this time (she is still

fed through the G-tubetoday).

Finally, on May 20, 2002,we were able to bringJylian Shay home! We hadalready made arrangementsto meet with Dr. KennethSalyer for Jylian’s initialcraniofacial visit and skullscans on May 23. We had begun to researchcraniofacial conditions andtreatments while we werestaying in the hospital andwere confident that Dr.Salyer’s craniofacial team at Medical City Dallaswould be able to give ushelp and hope.

Jylian’s abnormallyshaped skull was officiallydiagnosed as craniosynos-tosis, and on September13, 2002 her first cranialsurgery was performed inDallas. Because of Jylian’supper spinal anomalies, hersurgeons removed much ofthe base of her skull andpart of her C-1 (cervicalspine). She lost a lot of

could not breathe on herown. John touched herchest briefly, and she wasrushed to the NICU. Ourfamily and friends waitedanxiously in the hall, but asthe tiny bed rushed by,everyone knew somethingwas not right.

I soon woke fromsedation, and I wasinformed that Jylian wasborn with a multitude of“anomalies.” The situationwas surreal, and we wereso sad and confused. Thenext few days were touchand go, and the doctorsknew that Jylian’s conditionwas extremely rare. Jylian’sjaw was recessed, and itwas blocking her airway.Her skull was abnormallyshaped, her fingers andtoes were very long andthin, and there wereconcerns about her heartand vertebrae as well. Wewere not able to holdJylian. We knew practically

nothing about medicalprocedures, and wedesperately wanted to betold that there was an easyway to “fix” all of Jylian’sabnormalities. We wereemotionally exhausted, yethopeful and so proud ofour precious girl. In oneweek, I felt as if onehundred years had passed. I was in a new world, and I was instantaneously adifferent person.

Jylian was transported toCook Children’s Hospitalsoon after her birth. Sheneeded a tracheostomy inorder to be able to breatheon her own. On thescheduled day of hersurgery, her surgeonsdiscovered a tear in Jylian’sintestine. She underwentemergency exploratorysurgery, and she needed atemporary colostomy. Wefelt as if we had beenknocked to the groundagain, but we pushed onand immediately learnedhow to care for the

John, Kendall and Jylian Bilbow

9see Jylian, page 10

Jylian, from page 1

blood, and she was in thePICU for about six days. Wefelt relief to know that theyhad given her brain plentyof room to grow. Fourmonths later, Jylian’ssecond skull surgery wasdone. This time, hersurgeons worked on thefront of her skull, includingher brow-line. We began tolearn just how strong-willedour sweet Jylian was. Herlittle eyes swelled shut, butshe learned to stretch hermouth open very wide inorder to “pull” her eyesopen. We would laughbecause it was so cute, andour giggles made her laughuntil her eyes closed again!It was precious.

Our next step was thejaw distraction. Thisprocedure would advanceJylian’s lower jaw, so thatshe would no longerrequire the trach. We hadyet to hear Jylian’s sweetlaughs (and cries), and wewere looking forward tothe possibility of lifewithout the trach. Theexternal jaw devices werecumbersome, but she

adapted as if they weren’teven there. John and Iturned the devices every-day, eventually advancingher lower jaw significantly.She would wear the devicesfor almost six months.

Jylian’s first year was filled with surgeries, butthroughout this time, wewere hopeful that wewould see her gainstrength. Her physicalprogress was very slow. Wewere beginning to learnthat Jylian’s syndrome wasmore severe than we hadhoped, and it affectedmuch more than hercraniofacial bones alone.John and I have remainedhopeful and positive fromday one. There were (andare) situations in which one or both of us “breakdown,” but we havealways been able to see thegreatness and the miraclesin Jylian’s life. At thisparticular time, as we werecoming to realize how sig-nificantly Jylian’s hypotonia(low muscle tone) wasaffecting her life, our hearts

were heavy. Jylian’s sweetspirit and bubbly personalitycarried us through!

Surgeries became lessfrequent, and we had moretime to realize the need fornetworking with otherfamilies and raising aware-ness of craniofacial condi-tions. We also felt called touse our resources to helpraise money for childrenwho do not have access tocraniofacial surgeons andquality care. I truly believethat Jylian has touchedlives, and we are committedto helping her make adifference. I created Jylian’swebsite (www.jylian.com),which has helped share herstory and information abouther surgeons and thecraniofacial organizationsthat mean so much to us.

Jylian’s third cranialsurgery was done just afterher second birthday, andshe recovered quickly.Home therapy resumed,Jylian was doing well, and we were anxiouslypreparing for our very firstCCA Retreat. At the 2004Tempe CCA Retreat, Johnand I felt a sense of peaceand normalcy that we hadnever experienced. Wewere able to let go of ourburdens and simply havefun with other families whoknew exactly what thoseburdens were all about. Itwas an amazing time, andwe knew we never wantedto miss a CCA Retreat!

Jylian’s jaw devices hadbeen off for more than six

10

Jylian, from page 9months, and we began to“cap” her trach. We hadto go through several sleepstudies and failed attemptsto remove the trach. We had always beencomfortable with the trach,and we knew that wecouldn’t let this difficultpart of our journey lowerour spirits. In God’s time,when we were leastexpecting it, Jylian’s trachcame out successfully! Thiswas a huge step for Jylian!

Our time of celebrationbecame short-lived. Wehave learned to “expect theunexpected,” and we wereknocked off of our feetagain when we learned thatJylian’s spinal anomalieswere severe, and her spinalcord was potentially at risk.Jylian needed surgery tofuse her two uppervertebrae to the base of her skull. This would requirethat she wear a halo forthree to four months. Wehad our brief moment ofdisappointment, and thenwe began to look forwardto the surgery that wouldhopefully bring stability toour baby girl.

We learned that Jylianhas an extremely rareMarfanoid Craniosynostosissyndrome, which is aconnective tissue as well as a craniofacial disorder.There are only about 20other people in the entireworld that have been diag-nosed with this particularsyndrome. We now knowmore about treatment for

Jylian’s heart anomalies,and we’re grateful for ournew information.

Although much of thisyear has been a waitingperiod for the spinal fusion,Jylian’s made some hugestrides. She began home-bound pre-school, and it’sabsolutely amazing towatch her learn. She LOVESschool, and she is so bright!Jylian loves the “Wiggles,”and she doesn’t need to beon her feet to do the movesto EVERY “Wiggles” song!She loves her dolls, musicand her new “princess”room! Through the miracleof adoption, our Jilly Beanwill also be a big sister inthe months to come. Wecan’t wait!

Jylian’s spinal fusion willtake place soon, and we areprepared. We have beenblessed with an amazingsupport system, includingfriends, family and ourchurch family. Jylian inspiresus everyday, and I don’tknow who I would be with-out her. When we began toplan our family, I neverwould have imagined thatwe would be faced with somuch adversity. Life is a gift,and it’s not easy. God hasgiven us peace and joy inthe face of the adversity.Jylian is not her fragilebody. She is the essence ofstrength and determination.We look at Jylian and seewhat life is really all about.

2006 Retreat Info

Registration is open for the 2006 Cher’s

Annual Family Retreat to be held in Hershey,

Pennsylvania June 22–25th. Contact Annie

Reeves at 800-535-3643 or email her at

AReeves@CCAKids.com for a registration

form and reservation information. Due to

space restrictions at the hotel, rooms will be

limited to immediate family members

(parents/siblings) of a child or adult with a

craniofacial condition. If you have additional

family members who wish to attend, contact

Annie for details.

11

“

”

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!

Gifts fromIndividuals

CCA Supporters (up to $100)

Sharon AllbrightChuck BatesMark & Mary Jane

BaumgartnerTed BickleyWilliam & Arlene BlumenthalMildred BonneauDavid & Yvonne BoonAngelic BurnsJennifer CharneyJohn ChiconidesHarold & Gail ChoenJane CrymbleGerald & Ruth DankelsonLaurie DeCarloAmy DibattistaRichard DinsdaleLindy EriksenJerry Lynn & Dianne ErwinMarlane & David Fitzgerald John & Carrie FollettJennifer G.Casey GoreJ. Thomas & Linda L. GottKevin Eugene HaughIona HendersonA.E. KarpinKathryn KempLaura KernJess J. LeyvaEdward LevyJames MacaulayAndrew MartinAngela MaubachLisa McInnisDon MeierElizabeth MoultonMina MulveyJanell E. NelsonRon NiermanJanet NovickCandace S. PowellKim RomeoDaniel SamborskiPaula Scheffman Martin SchweinhartMichael SnowChristopher StokesJohn J. SullivanTamey TahaRicky ThomasMaria TorresEdgar & Joan VallarDon WagamanJoAnn WittTelisa J. Woulard

donors, april 1, 2005 throughseptember 30, 2005*

CCA Friends ($100 +)

Amye M. AdkinsRalph AureliaJoseph BanieckiBill BuchananJimmy & Beverly ButeraLarry CarpenterWilliam ConradDiana Critchlaw Courtney DabbsGeorge DaleDede & Darin DankelsonAnthony & Sandra DeakinsPhilip & Tara EveJill GoreckiRenee GrastyReynold GravinaDennis HamiltonRoni HeinzeJohn & Arleen HeirtyElizabeth HoranRoger & Carolyn LambRobyn LaPianaRochelle LowensteinPeggy J. McDannelCharles ParrotAndrea RichardJennifer Sbranti Bruce ScheibeFred SeitzDaniel ServatySteven SharpDavid TurnerC.M. & Leila Wiley

CCA Extended Family ($500 +)

Christine BarrettMartha BrownPauline RidikerCourtney Vincent

CCA Sponsor($1,000 +)

Fred & Judi FreemanJane L. GoodmanConor McGann

CCA Benefactor($5,000 +)

Memorials / In-Honor Gifts Angelic BurnsCher Birthday BashWilliam ConradDede & Darin DankelsonJohn & Arleen HeirtyKathryn W. KempPeggy McDannelSmiley Face Campaign

Corporate /Foundation Gifts

CCA Corporate /Foundation Friends(up to $1,000)

Albertsons (PurchasesPercentage Incentives)

America’s Charities (EmployeeGiving Funds Management)

American Express EmployeeGiving

Covenant Medical GroupDell Employee GivingFunding Factory (Rebates

Program)Global Impact (Employee Giving

Funds Management)A D Hill Landscaping MaterialsHP Employee Charitable Giving

ProgramHiznay & AssociatesKroger (Purchases Percentage

Incentives)Lockheed Martin Employee

GivingPriceless Ponies SBC Employee GivingSafeway Inc. (Purchases

Percentage Incentives)Sarah Hall ProductionsThe Prudential Foundation

Matching GiftsTweezerman Corp.United Way of Tucson &

Southern Arizona United Way of Fresno County

(Directed Donations)United Ways of New England

(Directed Donations)Wellpoint Foundation

(Employee Giving/MatchingFunds Management)

World Reach, Inc. (EmployeeGiving Funds Management)

CCA Corporate /Foundation Sponsors($1,000-$5,000)

Independent Order of OddFellows – Century Lodge No. 492

East Bay CommunityFoundation

Charles Krieger FoundationWal-Mart

CCA Corporate /Foundation Partners($5,000 or more)

Biedenharn FoundationWells Fargo

*Listed are monetary donations since last September. We are extremely grateful for these and allprior donations, raffle ticket purchases, fundraisers and in-kind donations not recorded here.

We do our best to accurately recognize donors. If you notice an error, please let us know.

cca annual givingcampaign

when you receive our annual funds appealletter, you’ll read the amazing story ofJohn Moulton and the struggles his familydealt with as he grew up with Apert syndromein a time when CCA was not around.

Today, CCA is making a difference for manychildren and their families, and through yourdonation, you can too. Please think about–contributing to the best of your ability. Gifts ofcash, stocks, real estate, trusts and annuities willallow CCA to continue to provide programs andservices and will allow you a tax advantage.

If you do not receive our letter, you can accessit at CCAKids.com, where you can also hearJohn play the piano.

be remembered…bequest!

as you consider your year-end giving and a2005 income tax savings, this is also agood time to consider long-term tax savings.About 50 percent of what you leave behind atthe time of death goes for estate tax. That’shigher than income tax!

It pays to do some advance planning. When you consult an attorney or investmentprofessional regarding your will and assets, wehope you’ll consider a charitable bequest inyour will to CCA. Such a bequest not onlybenefits CCA, but it also saves you tax dollars.

save those cells!

please save your old cell phones for CCAas well as empty laser disk and ink cartridges from your computer printers.

CCA can turn those in for rebates! Just send

them to us. If you think you can fill a whole

box, call us and we will send you a labeled,

UPS pre-paid collection box. It’s that easy.

12

year-end contributions

cash donations to CCA can be made by credit cardanytime through December 31st. The IRS considersthe date the donation was charged to your card as thecontribution date even though the bill won’t come dueuntil January.

13

a n d s e r v i c e s i n t h e s p o t l i g h t

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

AReeves@ccakids.com

programs we offer• Toll-free hotline

• List of qualified

physicians

• Information and support

• Educational booklets

• Financial assistance

• CCA Network, a

quarterly newsletter

• www.ccakids.com

Web site

• Annual Cher’s Family

Retreats

• Public awareness

• Family networking

• Advocacy

ccaprograms

download the newsletter

if you are currently receiving the newsletter by mail, butwould rather download it from CCAKids.com, let usknow by sending your email to KSilverman@ccakids.com. The online version is in full color!

2005-2006 calendar of eventsdate event contactDecember 10 CCA Midwest Holiday Party JGorecki@CCAkids.com

Noon to 2:00 p.m. 262.781.0056

(light refreshments served) 800.535.3643

December 10 CCA Dallas Holiday Party AReeves@CCAkids.com

214.570.9099

800.535.3643

June 22–25 16th Annual Cher’s AReeves@CCAkids.com

Family Retreat 214.570.9099

Hershey, PA 800.535.3643

our new online Web store will beavailable soon on our Web site. Watchfor lots of great ideas for holiday gift giving,which will also serve to spread awareness of CCA!

www.ccakids.com

c o m i n g s o o n

crawford’swalk for cca

Special thanks to Maryand ParkerCrawford, their momLisa and everyone involvedin their Crawford’s Walkfor CCA. Even with a smallturnout, their efforts raisedover $300 for Children'sCraniofacial Association!Thanks!

If you are registered with Schoolpop

to benefit CCA, please notify us at the

CCA office: 800-535-3643.

14

your fair shareDid you know…

w hen the United Way Campaign at work asks you to contribute your fair share or any amount, youcan designate that the funds go to Children’s Craniofacial

Association. CCA is not a United Way beneficiary agency

but directed donations may be made to any 501(c)3

nonprofit organization you request. That way you will be

helping your workplace meet their campaign goals as well

as this important cause! Thank you!

financial assistance

do you travel to receive quality medical care? If youdo, and need financial help, CCA has a financial

assistance program that will help with food, travel

and/or lodging. Call CCA for an application at 800-535-

3643. All we ask is that you apply at least four to six

weeks prior to your next trip.

c an’t decide what togive those specialpeople on your list whohave everything?Consider a gift of $25 ormore to CCA in honorof a relative,friend orbusinessassociate.We’ll thensendthem a

teach your children well —give a meaningful gift thisholiday season

card that will acknowl-edge your generous gifton their behalf. What awonderful way to honorsomeone, help your

charity and teachyourchildren

the truemean-ing oftheseason.

family and friends raising funds

t hank you, Century Lodge #492 Independent Orderof Odd Fellows. Once again, they’ve stepped up andraised $1,000 for Children’s Craniofacial Association.

The Odd Fellows is an international, fraternal benevolent

society, and the award-winning Century Lodge #492 in

Carpenterville, IL, boasts many “biker” brothers. They

became supporters of CCA after being introduced to

Rob Gorecki during our annual motorcycle raffle at the

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

and Katz’s Deli and Bar of Houston, TX. They managed

to raise $500 against incredible adversity during the past

two months of weather and refugee/evacuee chaos!

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-

rant gives 10% of the meals served at this special table for

a month and they were kind enough to post CCA as ben-

eficiary for two consecutive months.

Thanks again, Jennifer, for thinking to help others when

you already have so much on your plate! And thank you,

Katz’s, and all who ate there!

If you have not yet submitted your

recipes for our CCACookbook, please

get them to us by mail or email asap!

Families deal with a gamutof feelings and emotions,and they also seek answersto their questions. Theyturn to family, friends andmedical professionals forunderstanding andsupport. They also turn toCCA. Some CCA programsand services are designedto provide parents,regardless of income level,with immediate supportand valuable information inthe early stages. Thoseservices include:• Toll-free physician referral• Toll-free support line • Craniofacial Syndrome

booklets• Advocacy to ensure

quality care• Annual family retreat

Katrina and Rita capturedthe entire media’s atten-tion. Most Americans nowhave vivid images of thedestruction and many haveresponded with kindnessand financial support. ForCCA, each September hasbeen designated craniofa-cial awareness month, andour goal is to capturegreater media attention inthe ensuing years. Weneed people’s financial sup-port to continue providingthe level of services thatare necessary. We need toeducate the general publicof our vision, “…a worldwhere all people areaccepted for who they are,not how they look.”

15

chair, from page 1

cCA welcomesProgram Director,Annie Reeves backfrom maternity leavefor the birth of herson, Connor Glen.Annie was disap-pointed to miss ourAnnual FamilyRetreat at the end ofJune, but Connorwas almost due at thetime. He was born just a

week or so later on July 7,2005, weighing in at 8lbs,8oz and 21 inches.

In early October, U.S.Representative Mike Rossof Arkansas introducedlegislation to guaranteeinsurance coverage forcraniofacial patients. This proposed legislationwas introduced becauseinsurance companies willsometimes label neededreconstructive care as“cosmetic” and denycoverage for this or otherreasons. The ReconstructiveSurgery Act of 2005 or HR4022 seeks to guaranteethat insurance companiescover medically necessarycare.

Approximately 100,000children are born each year with some degree ofcraniofacial disfigurement.In addition, both childrenand adults can developsuch conditions throughtrauma and disease. Thislegislation will help thesechildren and adults.Families and friends, it’stime to mobilize. Go to thefollowing Web site for moreinformation on this veryimportant piece of legisla-tion and to find out whatyou can do: www.aica-advocates.blogspot.com.

Robert Vargas, ChairmanBoard of Directors

public awareness about craniofacial conditions isimportant on several levels. It’s important that families find quality medical care, that healthcare professionals

are aware of the special medical and emotional needs of

children and adults with facial differences, that the public

understands and accepts facial differences and that

individuals with facial difference are accepted.

CCA has formed a network of regional volunteers across

the country who have banded together in an effort to

educate and inform the public. The regional volunteers

and CCA will now turn to local areas to recruit volunteers

who will distribute educational materials throughout their

communities.

If you would like to help educate your community and

take part in this national awareness effort, call or email CCA

Program Director, Annie Reeves at 800-535-3643 or

AReeves@CCAKids.com.

regional volunteers

annie’s bundle of joy

Honorary Chairperson:Cher

Board of Directors:Robert Vargas, CHAIR, Abilene, TXTim Ayers, Washington, DCGeorge Dale, Corning, NYTony Davis, Tuscaloosa, ALDeborah DeLay, Fort Collins, CODonna Gossett, Cullman, ALHeather Lermont-Pape,

Indianapolis, INDan Paulson, Fargo, NDRose Seitz, Youngstown, OHBill Sims, CPA, Dallas, TXRobin Williamson, Carrollton, TXStephen Wright, San Francisco, CA

Medical Advisory Board:Jeffrey Fearon, MD, CHIEF ADVISOR

CCA Network Editor:Kelly Liszt

CCA Network Design andProduction:

Robin Williamson, WilliamsonCreative Services, Inc.

Executive Director:Charlene Smith

Program Director:Annie Reeves

Development Director:Jill Gorecki

Administrative Assistant:Kelly Silverman

Business Manager:Cathy Evans

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

VOICE 214-570-9099FAX 214-570-8811 TOLL-FREE 800-535-3643URL CCAkids.com

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PERMIT NO. 555

children’s craniofacial association13140 Coit Road, Suite 307 • Dallas, TX 75240

If you no longer wish to receive thisnewsletter, please email your wishes toKSilverman@CCAKids.com or mail thelabel to the CCA office and ask that itbe removed from the mailing list.

If you know of someone whowould like to be placed on themailing list please forward to us their name and address.

Greg Patterson

you’ve seen his name mentioned often inour newsletter for a number of events. Greg Patterson has been a dedicated

volunteer for CCA for more than three years.

Although Greg volunteers in many

capacities, he’s best known for his contribu-

tion to the annual Sturgis motorcycle raffle.

In addition to selling tickets, he has spent

numerous hours on the road transporting

the raffle motorcycle and CCA equipment

each year. Greg has generously donated all

fuel and travel expenses, not to mention

his personal time.

Greg also helps in the office with

the quarterly newsletter and lends his

photographic skills at various CCA events.

Greg is truly a special guy who always helps

out when we ask. Three Cheers for Greg!

3cheersf o r v o l u n t e e r s !