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messagefrom thechairman
we are a very specialcommunity. We
share things that manyothers — sometimes noteven close friends orrelatives — understand.Patients, parents andsiblings, and the staff,volunteers and supportersof CCA look a little deeper,understand a little fullerwhat it means to love aperson for who they are —not how they look.
It’s really a wonderfulbenefit of being involved inCCA. We become moresensitive to the feelings ofthose around us becauseour horizons have beenbroadened. Yes, we seecruelties, but we also seewonderful examples ofkindness and bravery.
ccanetwork
empowering and giving hope to facially disfigured individuals and their families
newsletter of the children’s craniofacial association Cher — honorary chairperson spring 2005
insidecca kidandrew perry . . . . . . . . 2cca gradrobbie gorecki . . . . . . . . 3fundraising news. . . . . . 5cca programs. . . . . . . . . 5calendar of events . . . . . 5facial palsy . . . . . . . 6-7odd fellows . . . . . . . . . . 8donors . . . . . . . . . . . . . 9cut-a-thon, dallas . . . 103 cheers . . . . . . . . . . 10craniofacial acceptance month . . 12
see chair, page 11
andrew’s storyby Karin Perry
becoming a mom is a hard job. No one prepares youfor what will be the most difficult (and rewarding) job
of your lifetime. When you become a mom of a child withspecial needs, it is even more difficult. When I had my son,Andrew, I was a first-time mom — and I was single.
My pregnancy was complicated throughout, and I hadmany ultrasounds. Despite all the prenatal testing, no onewas prepared for the complications at Andrew’s birth. Iremember that things went terribly wrong. Andrew wasrushed away from me, and then doctors told me that hewould be taken to Children’s Hospital in Boston. I was toldthat he had a multitude of problems, including a severefacial deformation. No one could tell me exactly what waswrong with him, but they did not feel confident that hewould make it through the night.
Suddenly I was making medical decisions for a baby Ihad seen only for a moment. I was alone in a hospital,recovering from a c-section, giving permission by phonefor doctors to do surgeries on my tiny premature babywho I had not even touched or held.
see andrew, page 4
2005 Retreat Info
The 15th Annual Cher’s
Family Retreat will be at
the Gaylord Opryland Hotel
in Nashville, TN, on June
23–26. For more informa-
tion, contact Annie Reeves
at 800-535-3643 or
If you make your own
reservations, please let
them know that you are
with Children’s Craniofacial
Association or use Group
Code X-CCA05.
Andrew and Karin Perry having fun at a retreat.
andrew Perry is fear-less. The 11-year-old
from Hopkinton, MA, hasperfected his snowboardingtechnique so much he nowboards down the mostdifficult trails possible —double-diamond!
He is also very brave. He’s had 20 operations so
far with a few more to go.Luckily, he celebrated hisfirst full year without anyoperations.Congratulations,Andrew!
Right now, he has justabout finished the fifthgrade. He enjoys Math andScience the most. This sum-mer he’ll have more time to
ccakid
meet andrew perry
Andrew Perry
2
play video games and col-lect Pokémon and Yu-gi-ohcards. He’ll also pursue hisother outdoor hobbies:swimming, camping andfishing.
He’s also going to theupcoming retreat inNashville, his third retreat sofar. If you haven’t heard hisrendition of Cher’s song,“Believe,” you’re missingout! He stole the show, andthe mike from the DJ, lastyear. Hopefully he’ll sing forus again.
As for Cher, she andAndrew are good friends. Infact, he saw Cher in concerton Tuesday, April 12. This ishis second time to see her
show and visit her back-stage. Last time he sat onthe front row. This time hewas further back, and Cherwouldn’t have any of it. Shehad Andrew move seats sothat she could see him dur-ing the show. How cool isthat?
Andrew has gonethrough much in his younglife. Twenty operations is alot to endure. But his familyand good friends, Cameronand Nathan, have stuckwith him through the roughtimes. His advice to otherCCA kids is to be brave.And on the practical side,he offers this advice: “Don’teat too soon after surgery.”
3
ccagrad
meet robbie gorecki
my name is RobertGorecki. My family
and friends call me Robbieor Rob. I’m 18 years oldand have lived inBrookfield, WI, all my life. Iwas born with a craniofa-cial anomaly calledGoldenhar syndrome,which caused a facial cleft.
I was missing an eye andan ear and the roof of mymouth (palate). My momtells me I had my firstreconstructive surgerywhen I was three and halfmonths old. Somewhereafter two dozen or sooperations she lost count.
My syndrome doesn’taffect my mind’s ability, buthaving a lot of operationswhen I was little set meback a bit. I didn’t walkuntil I was two years oldand I didn’t know myalphabet until secondgrade. I never liked beingin the “special” classes butit helped, and I’ve caughtup. I will be graduatingfrom high school this June.
People are pretty nice forthe most part, but kids canbe mean. I have an olderbrother, Erick, and whenwe were younger, he pro-tected me a lot when peo-ple would stare. But weeach went to differentgrade schools and jr. highs,and by the time I got tohigh school, he had alreadygraduated. I had to learn
how to deal with the meankids and fend for myself.Sometimes I’d just stareback. Sometimes they triedto get physical and pick afight. I didn’t back downand they usually left mealone. People seem to fearthings they don’t under-stand.
I have a reconstructedear and a fake eye. Otherthan looking different, mymain challenge is myspeech, particularly speak-ing clearly enough for peo-ple to understand.
Even with one eye andone working ear, I can doeverything anyone else myage does. I drive a car(truck). I also own and ridea motorcycle.
I’ve liked motorcycles foras long as I can remember– maybe because we live inthe Milwaukee area, homeof the Harley. Bikers arenice to children, and whilegrowing up I made a lot offriends in the motorcycleindustry.
I think having CCA’s sup-port while I was growingup made a big differencein my life. I’ve beeninvolved since the start,and I’ve only missed onefamily retreat. I met otherkids like me, and my wholefamily found out that wearen’t the only onesdealing with craniofacialproblems.
Every year the retreatwas our family vacation. I’dalso get to visit the Harley-Davidson dealership inwhichever city it was heldto add to my pin collectionfor my biker vest.
My parents put up withmy interests, but are notlooking forward to mydesire to get tattoos. I havescars on my arms and chestfrom surgery, and I figure atattoo is no worse! I tell mymom, “God put me on thisearth looking different; Imight as well run with it.”
When CCA started theirsummer fundraiser in 2001raffling off a motorcycle, Ibecame the charity repre-sentative/ poster boy. Eachyear we travel to Sturgis,SD, and I’m in my elementwith all my biker buddies.After graduation, I willattend MMI (MotorcycleMechanics Institute) inPhoenix, AZ, in the fall.
I am not afraid to go outinto the world and live mylife, and I hope I inspireany younger kids withcraniofacial difficulties todo the same.
Robbie Gorecki
“God put me on this earth looking different; I might as well run with it.”
4
appointments with speechtherapists and occupationaltherapists that came to myhome four times a week. Igot up all night long tofeed him by g-tube and feltlucky to have three or fourhours of sleep a night.
During the next fewyears, things became easi-er. Andrew got healthier ashe got older, and he hadfewer appointments. Themachines and equipmentbecame part of my life andno longer seemed so over-whelming. I took manyprecautions to make suremy family knew how tooperate his feeding pumpand suction machine andknew his medicationschedule. I had laminatedindex cards in his diaperbag with details about hiscare in the event I wasunable to be there.
Andrew did not haveanother surgery until hewas five years old, whenthey took a nerve from hisleg and transplanted it intohis face. When he turnedeight, Andrew wentthrough the most radicalsurgeries of his life. He hada multi-step jaw distractionthat involved more than 11trips to the operating roomin 10 months. In total, wespent nearly 30 nights inthe hospital. Together,Andrew and I have gonethrough 20 surgeries.
It is hard to be the solecaretaker during thesestressful times. I have hadto realize that I am only
human and that I do havelimits. I allow myself to feelsorry for a while, cry, andlet it all out. It is hard to bethe one making all thedecisions. It is hard to findtime to get sick. It is hardto remain upbeat and posi-tive when you see yourchild in pain. It is hard toask for help.
Finding CCA threeyears ago was a gift.CCA has been the mostvaluable resource I havehad in Andrew’s lifetime. Ifinally have people who Ican talk to, and whounderstand what it is liketo have a child who looksdifferent. Going to retreatwas the best thing Ihave ever done. Not onlydid Andrew meet otherchildren who were differ-ent, but I also met someamazing families. I havebecome friends with othermoms, and shared mystory. I have found thatthere are a lot of singlemoms like me. Meetingthem has been inspirationalto me.
I am lucky. I have a child Iadore, and now I have awonderful man in my lifewho is supportive of bothof us. When people ask mehow I did it for all thoseyears, I smile. My life wasinsane, overwhelming, tir-ing and crazy. But, I havethis terrific kid, and when Isee him smile his own spe-cial smile, I know he wasworth it all — everyminute!
I felt as if I might drown inmy own tears. I felt as if theweight of the world wasresting on my shoulders. Myfamily tried to be helpful,but ultimately, I felt solelyresponsible for life anddeath decisions for my son.
When my parents tookme to see Andrew inBoston, I was introduced tothe overwhelming world ofmedicine and the NICU.Andrew had been diag-nosed with micrognathia (atiny, underdeveloped jaw),microglossia (essentially notongue), seventh nervefacial palsy, optic nervehypoplasia, a heart defect,and irregular brain activity,which the doctors thoughtmight be seizure activity.
The doctors struggled tofind a “syndrome” that fitAndrew. (They never did.He is totally unique.)Andrew remained on a res-pirator for eight days andwas unable to eat bymouth. Eventually, Andrewbegan breathing on hisown, and a g-tube wasplaced to feed him.
When I look back on thefirst year of Andrew’s life, Iwonder how I survived. Hewas hospitalized until hewas five weeks old, andthen I brought him home.The bedroom we sharedlooked like a hospital room.I was totally unprepared fortaking care of a newborn,never mind a newborn withall these extra attachmentsand parts!
I remember counting thenumber of appointmentswe had during his first year— 57 scheduled clinicappointments, not countingthe trips to the pediatricianfor weekly weight checks,colds, ear infections andbouts with pneumonia.
When Andrew was fourmonths old, I returned towork to keep my medicalinsurance, and was strug-gling to stay awake at myjob as a special-needsteacher. I paid a nurse whowas home on maternityleave to care for him dur-ing the day, as I could notfind a daycare center thatwould take him. I rushedhome each day afterschool to take Andrew toEarly Intervention and keep
andrew, from page 1
BEFORE: Andrew at 3 months
AFTER: Andrew now at 11 years
did you receive “a specialmessage from cher”?
by now, everyone on our mailing list should havereceived the CD message from Cher appealing for
donations to CCA.Please consider helping with an amount of $25, $50, $100
or more so we may continue to fund our programs andservices which are a vital part of the physical and emotionalhealth of so many kids.
Your assistance furthers our mission to empower and givehope to facially disfigured individuals and their families.
Children’s Craniofacial Association envisions a world wherepeople are accepted for who they are, not how they look.
Your help is most appreciated. Thank you!
Be one of the first 100 people
to donate $100 or more and
receive a copy of the 20th
Anniversary DVD, Mask,
starring Cher! To find out
more, go to our Web site
at www.ccakids.com!
2005 calendar of eventsdate event contactJune 11 Cleft Lip/Palate Care www.stjohnsmercy.org/
Birth through Maturity professionals/ Conference on cleft lip and palate cleftpalate.pdfSt. John's Mercy Medical Center St. Louis, MO
June 12–17 Camp About Face 317.274.2489 Bradford Woods Outdoor Education Recreation and Camping Center Indianapolis, IN
June 23–26 Children’s Craniofacial Association 800.535.364315th Annual Cher’s Family Retreat www.CCAKids.comNashville, TN
June 24–26 NOVA Family Conference www.novanews.orgConference concerning hemangioma and vascular malformationsTriangle Park, NC
July 17–19 North American Craniofacial www.cleftadvocate.orgFamily ConferenceLas Vegas, NV
August 12 CCA Win-a-Bike 2005 www.CCAKids.comRaffle drawing in Sturgis, SD 800.535.3643
September Craniofacial Acceptance Month www.CCAKids.com800.535.3643
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 seekemotional support, discuss problems and identifyresources. Through our database we are able to networkfamilies with support groups and/or others who havesimilar 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 ashoulder upon which to lean. For further assistance orinformation call Annie Reeves at 800-535-3643 or [email protected]
programs we offer• Toll-free hotline• Doctor referral• Information and support• Educational booklets• Financial assistance• CCA newsletter,
CCA Network
• www.ccakids.com Web site
• Annual Cher’s FamilyRetreats
• Public awareness• Family networking• Advocacy
ccaprograms
5
think about the last face-to-face conversation you
had. Consider how muchyour communication andunderstanding was derivedfrom facial expression.Remember the feelingsexpressed, the subtletiesconveyed, the joy oranguish instantly revealed.Now imagine the frustra-tion and isolation felt bysomeone whose face doesnot speak — no smile, noblink, no pucker for a kiss.Facial paralysis can affectonly a small part, or some-times half, of the face.Occasionally, the entire faceis enveloped in a mask-likesilence. But whether it is asmall area affected or theentire face, facial palsy is adevastating problem.Fortunately, there are someanswers.
Nearly 40 muscles controlour facial expressions. Usedin various combinations,these muscles are capableof creating more than5,000 different expressions.Almost all of these musclesare controlled by a nerveappropriately called thefacial nerve. The facialnerve exits the skull behindthe opening of the ear,then travels through theparotid gland in front ofthe ear, branching exten-sively to reach all of themuscles used for facial
expression. In people withfacial paralysis the nervecan be absent at birth,rendered non-functional byvirus or inflammation, orinjured by trauma orsurgery. Injury to this nervecan occur inside the skull,outside the skull before thenerve branches or to any ofthe individual branches.The exact location of theinjury will determine theresulting deficit and ulti-mately direct the treatment.
Static reconstructions,some of the earlier meth-ods of reconstruction, stillhave a few limited applica-tions. As implied by thename, static reconstruc-tions do not move theface. They involve the sus-pension of facial tissues ina more normal (less droop-ing) resting position. Thesetechniques can significantlyimprove resting appearanceand oral competence(drooling) but do nothingto provide animation to theface. Animation requiresnerve input and muscleresponse.
When a nerve is injured,the nerve fibers betweenthe injury and the targetmuscle die. These fibersthen regenerate at a rateof about one millimeter perday. If an injury to thefacial nerve or branch doesnot involve a loss of length,
then the injured nerve canbe re-approximated direct-ly. It will still take severalmonths for activity toreturn to the muscle, asthe nerve regeneratestowards the target muscle.
If there is a loss of lengthof the nerve, as when asegment is removed with atumor, then a nerve graftcan be harvested fromanother part of the body,usually the leg, andattached between the twocut ends of the facialnerve. The facial nervefibers then grow throughthis nerve graft to the tar-get muscle. Alternatively, ifthe facial nerve is resectedall the way back to whereit exits the skull, a nervegraft can be placed fromthe facial nerve on theunaffected side of the faceto the remaining nerve onthe affected side of theface. This is called a cross-face nerve graft.
In cases of congenital orany long-standing facialparalysis lasting more thanone to two years, the tar-get muscle atrophies canno longer be stimulated bya nerve. Reanimation of alongstanding facial paraly-sis, therefore, requires newmuscle, which can be stim-ulated to be placed in theface.
Local muscle transferinvolves the use of othernearby facial muscles, pri-marily those used forchewing, to provide move-ment for the face. Thesemuscles are controlled by adifferent nerve, which isusually not affected by theparalyzing process. Someof the more common tech-niques involve the use ofthe temporalis muscle orthe masseter, two musclesused in chewing, or a com-bination of the two. Whilesome facial motion can begained with this type ofreconstruction, the move-ments are often unnaturaland never spontaneous, asthe person needs to learnto “bite-down” to create asmile.
The most complex butalso the most promisingtechnique for facial reani-mation is a combination of
6
facial palsyby Christopher JM Brooks, MD
continued next page �
For more information aboutFacial Palsy, download thisbooklet from our Web site,www.ccakids.com
cross-face nerve graft andfunctional free muscletransfer. Transfer of a mus-cle to the face requiresmicrosurgical reconnectionof the blood vessels of themuscle to blood vessels inthe face. In addition, theremust be a microsurgicalconnection of the nerve ofthe muscle to a nerve inthe face. There are severalmuscles that are frequentlyused, including the gracilisfrom the inner thigh, thepectoralis minor from thechest, and the serratusfrom the trunk. Each hasits benefits and drawbacks,its proponents and critics.
Free muscle transfer forfacial palsy requires at leasttwo procedures. First, across-face nerve graft isconnected to segments ofthe facial nerve on theunaffected side. The nervegraft is then tunneled tothe paralyzed side and leftunder the skin in front ofthe ear, or in the upper lip.Nine to 12 months later,after the facial nerve fibersfrom the unaffected sidehave grown through thegraft to the paralyzed side,the free muscle is trans-ferred to the paralyzed sideof the face. Its blood vesselsare connected to blood ves-sels in the area, its musclefibers meticulously orientedto produce the appropriatesmile angle, and the nerveto the muscle connected tothe cross-face nerve graft.After a couple of monthsto allow the facial nerve
fibers to grow into themuscle, function slowlyreturns.
In people with bilateralfacial palsy, such as inMoebius syndrome, across-face nerve graft isnot possible since neitherside of the face has a nor-mally functioning facialnerve. Here there is nochoice but to use differentnerves, such as the nerveto the masseter (chewing)or to the hypoglossal(tongue movement) to con-trol facial movement. Inseparate procedures muscleis transferred to each sideand one of these nervesconnected to the muscle.While spontaneity remainsa challenge, symmetry canbe quite good.
Regardless of the cause,facial palsy can be quitedevastating. While reani-mation of the face remainsa significant challenge,there are reconstructiveoptions available to restorefacial movement andthereby significantlyimprove socialization andself-esteem. Today the facethat does not speak neednot remain silent.
new booklets
cCA is proud toannounce the addition
of three syndrome bookletsto our series of bookletsintended for new parents.A Guide to UnderstandingCrouzon Syndrome, AGuide to UnderstandingFacial Palsy and A Guide toUnderstanding FibrousDysplasia are currentlyavailable for downloadingon CCAKids.com.
In addition, we updatedfour of our existing booklets:A Guide to UnderstandingCraniosynostosis, A Guide to Understanding ApertSyndrome, A Guide toUnderstanding TreacherCollins Syndrome and AGuide to UnderstandingHemifacial Microsomia.You will find them atCCAKids.com, too.
We thank Dr. ScottBartlett, Dr. Ian Jackson,Dr. Hrayr Shahinian andDr. Linton Whitaker fortheir contributions towardthese publications. And aspecial thanks to DianaSweeney for her help withcoordinating them. Printingof four of the booklets wasgenerously donated byCRW Graphics located inPennsauken, NJ. Layoutwas donated by RobinWilliamson of WilliamsonCreative Services, Inc.located in Carrollton, TX.
More booklets will beavailable soon.
7
new programdirector
we are sad to
announce the
departure of Program
Director Jana Butera.
Although Jana is not in the
office anymore, she will
continue to serve on the
Program Committee and
remain very involved with
the organization.
At the same time, we’re
happy to announce that
our former office manager,
Annie Reeves, with whom
many of you have spoken
or met at the Tempe
retreat, has accepted the
Program Director position.
Annie has already jumped
right in, with this edition of
CCA Network being her
first project.
Congratulations Annie!
If you have any program
needs please email Annie
or call her at 1-800-535-
3643.
you talked.we listened.
have you checked outthe CCA Web site
lately? We have madelots of changes to thesite as a direct result ofthe survey we sent out in2003. Check it out!ccakids.com
good odds
abig Thank You to “Doc” Remer, his wife, Maggieand all the lodge brothers of Century Lodge #492
Independent Order of Odd Fellows. The group held afundraising dinner for CCA on St. Patrick’s Day and raised$470 in a few hours.
Jill Gorecki traveled with her son Robbie to Carpentersville,IL for the evening event which was held at the lodge head-quarters. They presented framed certificates of thanks toDoc and the group. Rob, who was befriended and intro-duced to the Odd Fellows in 2001 during CCA’s motorcycleraffle fundraiser in Sturgis, SD and joined them for a CCAfundraiser with Robbie Knievel in 2002, enjoyed hearinghow much he’d grown since they saw him last!
8
cut-a-thon raises $1,682
dallas-based Salon D (www.salond.com) and CCAteamed up for a Cut-A-Thon fundraiser on April 3.
Salon D’s top stylists gave their time, and their amazingexpertise, to create trendy new hairstyles for a minimum$25 donation.
From 11 that morninguntil 5 in the evening, thesalon was abuzz withlaughter, smiles and amaz-ing new dos. Jason’s Deli,Chili’s and CelebrityBakery donated a yummyselection of sandwiches,appetizers and sweettreats, and SouthwestAirlines, Black-Eyed Pea,Pappas Brothers, Del
Frisco’s and Starbucks donated door prizes. Salon D gaveaway a massage, Beverly Butera donated a tennis racketand Annie Reeves, CCA’s new program director, gave aMary Kay gift basket. A representative from Jingles gaveaway gift bags filled with fabulous hair care products. AprilJohnson donated a doggie treat basket and a gift certifi-cate for April Showers (her invitation/card company).
Everyone had great time. CCA kid Torey Harrah andher friend got haircuts. Jylian Bilbow and PrestonJohnson were also on hand to join in the festivities.
Many thanks to Ardem, owver of Salon D, for workingclosely with CCA to coordinate this event.
“The Cut-A-Thon was a success,” said Annie Reeves.“We had a great opportunityto help the kids and their fami-lies as well as walk away witha new look,” she said. Annieplans to coordinate the nextCut-A-Thon later this year withanother salon.
If anyone wants to host asimilar event in their town, callAnnie at 214-570-9099 or tollfree at 800-535-3643.
Rob Gorecki hangs with a few of the capable cooking/cleanupcrew of Century Lodge #492 Odd Fellows after the St. Patrick'sDay fundraising dinner.
Noble Grand of the Century Lodge, Ken Loos and lodgebrother/fundraiser organizer, Doc Remer accept Thank Youcertificates from Jill Gorecki on behalf of CCA.
CCA Kid, Torey Harrah and herfriend are all smiles after gettingtheir new dos.
Jylian Bilbow and her momshare in the fun.
Gifts fromIndividuals
CCA Supporters (up to $100)
Marcy AndersonElizabeth J. Bainbridge-VitezP.G. BargerLinda BergmanWilliam & Arlene BlumenthalMike BoskoP. BowkerDonna L. BoyerMegan Marie BrasserJana Butera Larry CarpenterBarbara S. ChernetzLillian CintronLucian & Flora ConnerElgin & Gwenith CorzineAnn DickinsonCathy L. EvansRichard P. FerleFrank & Maryann GilsonRonnie & Donna GossettMeredith GreenBarbara GreenfieldEdward C. & Constance HainesDenyse HalperinKevin Eugene HaughJohn & Arleen HeirtyEddy & Deborah HoenigPaul & Patricia JohnKathryn W. KempMichael & Kathryn Kevany Marlee MacLeodSanford & Karen MarkovitzAngela M. MaubachK. McCoyPeggy J. McDannelJune K. McDowellDon Meier
donors, october 1, 2004 – march 31, 2005*
Robert & Barbara MellendorfKaren N. MilesRich MohnJanell E. NelsonEldora & Howard Niedemiller Kevin D. OrtmanCandace PowellTommy & Annie ReevesDavid & June SimonRonald & Deborah SmithAndrea StewartWilliam H. Jr. & Kimberly K.
TawneyLeona VitoloCarole VossDaniel WalkerTerri WarrenRita R. WattonBarbara J. WiedenmanJoann Witt
CCA Friends ($100 +)
Marcy AndersonC. BarrettJim & Beverly ButeraJoe W. CherryRoger S. ChinGeorge DaleJohn & Carrie FollettLenore GoldfabJill GoreckiLenore GoldfabKenneth GoodmanJames L. & Alison B. HawseJohn HolcombSondra P. HicksKathy J. HubbardMary JonesRoger & Carolyn LambHeather Lermont-PapeStephen LuhrsPatsy Ng
William H. & Eleanor B.Overbeck
Steven L. PageMargaret SalvioliMs ShareallWilliam SimsStephanie Mary SklarMitchell & Sharon D. SmithSusan & Oyvind SolvangEverett L. Stow, Jr.Morton & Eunice TeitelbaumRobert VargasCourtney VincentRobert J. & Arlene D. WeisDennis WoodenJohn & April Wharton
CCA Extended Family ($500 +)
John & Laurie BovenkampDiana M. Critchlaw Rob EijkholtJeffrey A. Fearon, MDSondra P. HicksStephen Wright
CCA Sponsor($1,000 +)
William A. & Jannell L.Bloomhall
April Fontana (Cher The LoveCampaign)
Daniel & Denise PaulsonJohn & Charlene Smith
CCA Benefactor($5,000 +)
Charles & Willmetta AllenEstate
Robert & Maryellen FettigHazeldeane Pritchard bequest
Memorials / In-Honor Gifts George BeaverMegan Marie BrasserJana ButeraJim & Beverly ButeraLarry CarpenterJeff & Jeanette FrazierLenore GoldfabJames L. & Alison B. HawseJohn HolcombJohn & Arleen HeirtyHillcrest Plymouth, LLCJohn HolcombPaul & Patricia JohnKathryn W. KempPatsy NgTommy & Annie ReevesSusan & Oyvind SolvangPatricia & Harold TimmerVan Andel ArenaRichard S. Ward Lumber Co.John & April WhartonBarbara J. WiedenmanRobert J. & Arlene D. Weis
Corporate /Foundation Gifts
CCA Corporate /Foundation Friends(up to $1,000)
AT&T Employee MatchingAlbertsons (Purchases
Percentage Incentives)America’s Charities (Employee
Giving Funds Management)American Express Employee
GivingBank of America Employee
MatchingBonzai, LLCCars Helping Charities, Inc.Castle Custom Cabinets, LLCDell Employee GivingDoug Doggett JewelersFiserv CBSFunding Factory (Rebates
Program)Greater Milwaukee Foundation,
Inc.Harley-Davidson of Bellingham,
Inc.HP Employee GivingHillcrest Plymouth, LLC
Kampis GroceryKatie’s Clothes BinLa Petite JewelersLockheed Martin Employee
GivingSBC Employee GivingSafeway Inc. (Purchases
Percentage Incentives)Smith Family Tire, Inc.The Frugal Flower, Inc.
(Purchases PercentageIncentives)
The Mortgage CenterThe Prudential Foundation
Matching Gifts Triangle United Way (Directed
Donations)United Way of Fresno County
(Directed Donations)United Way of Metropolitan
Tarrant County HumanityFund (Directed Donations)
United Way of Long Island(Directed Donations)
United Ways of New England(Directed Donations)
Van Andel ArenaRichard S. Ward Lumber
CompanyWellpoint Foundation
(Employee Giving/MatchingFunds Management)
World Craniofacial FoundationWorld Reach, Inc. (Employee
Giving Funds Management)
CCA Corporate /Foundation Sponsors($1,000-$5,000)
Association WorksThe Brotman FoundationThe May Department Stores/
Foley’s
CCA Corporate /Foundation Partners($5,000 or more)
Biedenharn FoundationThe Chatlos Foundation, Inc.Edmund & Alice Opler
FoundationWal-Mart Foundation
*Listed are monetary donations since last September. We are extremelygrateful for these and all prior 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.
CLOCKWISE from top left: Char Smith, CCAexecutive director, gets her hair cut by one ofSalon D’s best stylists. Preston Johnson and hismom have a good time in Salon D’s lobby. KellyLiszt, CCA’s newsletter editor, gets a new look.Meet the Cut-A-Thon gang. 9
more cut-a-thon pictures…
east ElementarySchool wanted to do
something different thisyear for their PE fundraiser.For many years the schoolparticipated in the “JumpRope for Heart,” a won-derful fundraiser, but theywanted to do somethingfor another charity. CoachChuck Bowling and Ms.Parker asked me if CCAhad a similar type offundraiser. I told him I didnot know of anything, butI was sure we could comeup with something.
After some thought, Ihad the idea of having the
kids walk instead of jump.The kids could get peopleto sponsor them, for anyamount, to walk in a walk-a-thon, which would takeplace during each grade’sPE time. The kids wouldwalk for at least 30 min-utes on the playgrounds ofthe school. Prizes would beawarded for differentmoney levels raised. CoachBowling thought it was agreat idea.
I wanted the kids toknow who they were rais-ing the money for, so I dida presentation featuringpictures of CCA kids I met
last summer at the retreat.They all know that I have acraniofacial condition, but Iwanted them to under-stand what some of thesekids have to go through.They are kids just like they are — they just lookdifferent.
The community reallycame together and donat-ed prizes and money to
purchase T-Shirts for prizes.We had parents purchasesome top prizes, like a bicy-cle, a Game Boy Advanceand gift cards. The kids atEast were touched by thepresentation, and got reallyexcited to raise somemoney for CCA.
We held the walk-a-thonon April 1, and the kidsand I had a ball. I learnedwe have a lot of caring andwonderful kids and parentsat our school. EastElementary raised morethan $7,000!
First place winner MichaWaters, a third grader,won the top fundraiser
3cheersf o r v o l u n t e e r s !
Donna Gosset shareshow she organized aWalk-a-thon for CCA
10 continued next page �
I have often tried toexplain to people notinvolved with CCA howgreat the annual retreatsare. How comforting andfun they are. It’s a time —sometimes the only timeduring the course of a year— when the CCA “Kids”(many well into adulthoodnow) can let down theirhair and relax and do some giggling. They andtheir families don’t have to explain anything toanybody.
My daughter, Shannon,introduced me more than adozen years ago to CCA.The yearly retreats werealways a high point for us.Always a special time tomeet new people and havesome kick-out-the-jams funat The Party. I’ll always begrateful to Shannon forgetting me involved inCCA. It’s been one of thebest and most rewardingexperiences in my life.
At the May board meet-ing, I am resigning as chairof the Board. We have agreat Board of Directors,which now has a strong
committee structure that isaccomplishing a tremen-dous amount of fabulouswork. I’ll continue to serveon the Board until the endof my term and after thatI’ll be a CCA volunteer. Ican’t ever imagine notbeing involved in theorganization in some way.
It has been an honor toserve with the past andcurrent board members.They bring a deep commit-ment and lots of time andenergy to our organization.Thanks also to Sheryl andJohn Paul of Association-Works, our advisors whohelped us chart a coursefor the future and continueto make sure we stay onthat course. The amazing— and growing — body ofvolunteers that contributeso much to the Associationdeserve a huge “Thanks.”Of course, one persondeserving of tremendousappreciation is ourHonorary Chairperson,Cher (and you, too, Deband Jennifer), who keptthis organization alivethrough some hard times.
Last and far, far, far, farfrom least is the staff. They
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prize with $367 raised. Hewon the bicycle. Secondplace winner, Levi Hicks,also a third grader, raised$215 and won the GameBoy Advance. Third placewinner, Lauren Rasbury, afifth grader, raised $186and won a $50 Wal-Martgift card. Fourth place win-ner, Stephanie Swindle, afourth grader, raised $146and won a $10 gift cardfrom Blockbuster.
I am proud of them allfor doing such a wonderfuljob. We are planning onmaking this an annualfundraiser. Hopefully otherschools will do the same.
With activities like thiswalk-a-thon, kids can learnthe valuable life lesson ofbeing kind and respectfulto those who they perceiveas different, no matterwhere they may go.
— Donna GossettCCA Board Member
are there day in and dayout working with families.Jana Butera did greatwork with our families, andwe’re sorry to see her leavethe staff but happy toknow that she will contin-ue to be involved with ourwork. Annie Reeves ismoving into Jana’s positionand brings the same levelof care and commitment toour programs. Jill Goreckihas been toiling for severalyears to build a base offunding support for theAssociation, and I believethat work will pay off withinterest in the near future.
And a very special thanksgoes to the amazingCharlene Smith. Name avirtue and Char has it —compassion, good (andsometimes weird) humor,professionalism and, mostof all, a dedication to thecore value of CCA — theneed to empower and givehope to facially disfiguredindividuals and theirfamilies.
Tim Ayers, Board Chair
If you feel you have skills thatwould benefit CCA, please call800-535-3643 and ask for avolunteer application.
Go to our Web site tobuy tickets or for info
on the CCAMotorcycle Raffle!
IF YOU WOULD LIKETO SELL RAFFLE
TICKETS CALL KELLYat 800-535-3643.
a senior moment
baby Boomers (folks born from 1946 –1964) are fast approaching retirement
years and, with growing families, are draftingwills and trusts as well as estate planning.
Please remember CCA when making those plans! Contact us if you’d like ideas which could have a tax
advantage for you and your loved ones. It will have aprofound and positive affect on our future!
Honorary Chairperson:Cher
Board of Directors:Tim Ayers, CHAIR Washington, DCTony Davis, Tuscaloosa, ALDonna Gossett, Cullman, ALHeather Lermont-Pape,
Indianapolis, INDan Paulson, Fargo, NDRose Seitz, Youngstown, OHBill Sims, CPA, Dallas, TXRobert Vargas, 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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children’s craniofacial association13140 Coit Road, Suite 307 • Dallas, TX 75240
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craniofacial acceptance month
cCA has designated
September as
Children’s Craniofacial
Acceptance Month to
support the association’s
vision of a world where all
people are accepted for
who they are, not how
they look.
September will also mark
the time when many
children are returning to
school. We encourage
parents and our many
volunteers to continue to
help promote belonging,
hope and friendship
between our kids and their
community.
As an effective way to
get out the message and
help build awareness, we
encourage you to visit
ccakids.com and share
your story and perspective
of craniofacial conditions.
If your story is chosen,
we will contact you for
permission to use it in one
of our media campaigns.
In addition to your story,
please let us know of any
groups that might like to
be involved in our fund-
raising.
There will be many activi-
ties during the month of
September, so watch our
Web site for more informa-
tion in the coming months.
financialassistance
do you travel toreceive quality
medical care? If youdo, and need financialhelp, CCA has afinancial assistanceprogram that will helpwith food, traveland/or lodging. CallCCA for an applicationat 800-535-3643. All we ask is that youapply at least four tosix weeks prior to yournext trip.
download thenewsletter
if you are currentlyreceiving the newsletter
by mail, but would ratherdownload it fromCCAKids.com, let us knowby sending your email [email protected]. The online version is in full color!
knowing the reason – accepting the difference
