messagefrom thechairman

many people believethere is no such

thing as status quo for anorganization. If you’re notgetting better — you’regetting worse. CCA hasgone through somesignificant changes overthe past several years, andthey have all been for thebetter. We’re reachingmore families, we’redeveloping closer ties withhealthcare providers, ourfundraising has matured,our educational materialsare more expansive andwe’re taking a more activist role in advocatingfor patients.

The structure of CCA isalso changing in order tocontinue this momentum.Board members and staffhave a strategic plan for

ccanetwork

empowering and giving hope to facially disfigured individuals and their families

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

insidecca kidmeeka rowat. . . . . . . . . 2cca gradamanda critchlaw . . . . . 3fundraising families . . . . 5calendar of events . . . . . 5microtia . . . . . . . . . 6-7holiday parties . . . . 8-9fnms family conference . . . . . . . . 10cca programs . . . . . . 113 cheers . . . . . . . . . . 12

see chair, page 11

gavin’s storyby Ruben and Tricia Trevino

raising a special-needs child is filled with anxiety andfrustration, but it also brings a lot of joy and gratifica-

tion. My wife Tricia, our daughter Lauren and I had noidea what to expect March 18, 1999, the day GavinTrevino was born.

After learning of Gavin’s challenges, we quicklyresearched to find out what we were dealing with. Wehad not been told anything by doctors, so I searchedonline until I found something about GoldenharSyndrome. After taking my findings to the doctors, theydiagnosed that that is what Gavin was born with.

We spent the next few years going from one doctor toanother to decide a course of action for Gavin. We foundourselves still not satisfied with the answers we weregetting and continued to get second opinions. Most of thedoctors advised us to wait until Gavin was older to addressthe concerns of his jaw and anklysis. So we decided to

see gavin, 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 Jana Butera

at 800-535-3643 or

JButera@ccakids.com.

If you make your own

reservations, please let

them know that you are

with Children’s Craniofacial

Association or use Group

Code X-CCA05.

Lauren, Ruben, Tricia and Gavin Trevino

who’s warming upElkhart Lake, WI,

this winter with her sunnydisposition? Meeka Rowat,that’s who. In a recent inter-view, the bubbly third grad-er filled us in with what’sgoing on in her busy life.

For starters, Meeka justturned nine January 10. Sheand her family and friends,about 10 people total,celebrated with a birthdaybowling party. Everyonehad a great time, especiallythe birthday girl, whobowled “lots of strikes!”

When it comes to school,Meeka’s favorite subjectsare art, music, writing, gymand “computers.” Outsideof school, she loves todraw and paint and likes todance. She’s also teachingherself to play the piano.

Meeka also attends hippotherapy classes everyTuesday, where she workswith her horse, Zeus.

(“Hippo” is actually theGreek word for “horse,”and in hippo therapy, whichis a type of physical therapy,the horses’ movements helpstrengthen the patients’muscles and improvecirculation. The one-on-onecontact with the horse isemotionally therapeutic,too.) She’s also taking dres-sage lessons, where she’slearning riding techniquesand how to care for Zeus.

When she’s not busywith school or spendingtime with Zeus, Meekatakes care of her fish,Nemo, and kitten,President George, whomshe claims is a “cutie.”

Meeka and her family arerelatively new to CCA. Infact, her first retreat waslast summer in Tempe. Shehad a blast and madesome good friends. Herfavorite part was riding thecamel in the desert just

ccakid

meet meeka rowat

Meeka Rowat at the 2004 Cher’s Family Retreat in Tempe, AZ

2

outside Tempe. She alsohad a great time at theparty on the last night. Sheand her family also partici-pated in the CCA MidwestHoliday party in Kenosha.

And through CCA, Meekahad the opportunity to meetCher. She went to one ofher concerts and met herbackstage before the show.Cher even had a picture ofMeeka in her dressingroom. At this concert,Meeka sat right in front ofthe microphone, close bythe dancers. She had agreat time at the show, and,of course, is now one ofCher’s biggest fans. “It’s

really nice that Cher helpsfamilies,” she said.

Meeka has GoldenharSyndrome and has hadjaw surgery recently inChicago at the ShrinersHospital. This will be hersecond surgery so far. She’sdoing well. Her advice toothers going into surgery is“Don’t worry or be scared,because everyone will takecare of you.”

She also has some greatadvice for questions curi-ous people may have. Shesaid, “Just answer thequestions. When peoplestare, they just want toknow ‘why.’”

3

ccagrad

meet amanda critchlaw

my name is AmandaCritchlaw. I am 18

years old and live in LakeHopatcong, NJ. When Iwas three years old I wasdiagnosed with Crouzon’sSyndrome. Growing upwas not always easy, but Ihad the help of my familyand friends. My dad wasmy biggest help becausehe has Crouzon’sSyndrome, too.

I’ve been teased andmade fun of all throughschool. Luckily, I had anolder brother and wonder-ful friends who werealways there to stick up forme. When I was in fourthgrade, my dad gave meadvice I will never forgetand still use today. He toldme that when someonemakes fun of you, tosimply smile and say thankyou. People never knowhow to respond. Mostimportant, it shows themthat they cannot hurt you.

I’ve also learned that youcan’t be mad at people forwhat they say; most of thetime they don’t know anybetter. When people askme what is wrong with myeyes, I tell them about mydisorder and surgeries.

I’ve had people tell methey will never make fun ofanother person again, sometell me I’m an amazing per-son and others ask me howI can still smile with all I

have been through. I tellthem my disorder helpedme grow to be a better per-son and also helped medecide what I want to bewhen I grow up.

Through my surgeries andhospital stays, I knew Iwanted to be a nurse.Three years ago, after mylast surgery, I had anamazing nurse who inspiredme to be a pediatric ICUnurse. Currently, I attendMount Saint Mary College,where I’m in their nursingprogram. I will graduatewith my BSN, and then Iplan to go for my Master’sdegree in pediatrics.

I want to be a nursebecause I want to help chil-dren. I know how boring itis to be stuck in a hospitalbed, but I also know howscary it can be. My nurseplayed games with me, gotme McDonald’s and alsobrought her own shampooso I could wash my hair. Iwould like to be like herwhen I become a nurseand I only hope I can do asgood a job making kidsfeel comfortable.

I have been in involvedwith CCA since I wasthree. My family and I havebeen to every retreatexcept one. CCA has beenan important influence inmy life. I grew up knowingthere were kids like me.

I’ve made many lifelongfriends, and every year Imake a couple more. I’vealso met the most amazingkids at the retreats. Theyare also why I want to be anurse. CCA has helped megreatly growing up. I knowthat without them, I wouldnot be the person I amtoday.

My family, friends andeveryone at CCA helpedme realize that I can doanything. I have never letpeople bring me down orhold me back. Growing upI did many activities likedance, softball and basket-ball. In high school I wasalso a cheerleader.

I know I wouldn’t haveever done any of thesethings had I not had somany positive influences inmy life. I’ve learned that nomatter what people say, it’smy life and I want themost out of it.

I’d like to leave you withmy favorite quote byMother Teresa. Thesewords have helped methrough so much, and myhope is that they will helpyou, too. “I know Godwouldn’t give meanything I can’t handle, I just wish he didn’ttrust me so much.”

Amanda Critchlaw

4

study with the trachcapped to ensure that hedidn’t have any lingeringissues.

About 30 minutes afterputting him under theENT called for us inthe waiting room. Weimmediately knewthat this wasn’t thenews we werehoping for. The ENThad found thatGavin still had areasof concern in theback of his mouthand throat and saidthat they needed tobe addressed before wemoved forward.

This was heartbreakingfor us but nothing wecouldn’t get past. Weimmediately called thesurgeon in Jacksonville andsent him the informationfrom the ENT. We arecurrently working with thedoctors on a new plan ofaction for Gavin this year.

He is an amazing littleboy. While he can’t playorganized sports, we haveworked with him on devel-oping his baseball skillswith hopes that he mightone day be able to play. Hehas shocked many baseballfans like his Grandpa andUncle Tom, who haveunderestimated his abilitiesbecause of his size. They all have walked awaywondering how could

someone so small hit a ballso far? Some still have themarks to prove it.

We have learned muchfrom Gavin over the pastfive years. Faith, love andpatience go a long way. Asa family, we want to sharewhat we have learned bytelling our story and offer-ing advice. We would liketo thank CCA for allowingus to share Gavin’s storywith you.

wait, since we did not havemuch else to go on.

In August 2002, Gavinwas admitted to thehospital for a sleep study.Soon after the study hadstarted, the technicianknew immediatelysomething was wrong.Gavin was rushed intoemergency surgery to havea tracheostomy performed,as he was severely oxygendeprived. We had noticeda few months back thatGavin’s breathing hadchanged while he wassleeping, he was easily agi-tated, and his growth andweight were below normal.

After the trach was putin, we had to adjust quicklyas a family. It was not easyin the beginning, but noweverything is second nature.Gavin has done extremelywell with the trach. To oursurprise, he has handled itvery maturely.

Once Gavin had thetrach in, we knew wewould need to push thedoctors more to have asolid plan of action. Wehad been traveling toMiami for consultationsand decided at the sugges-tion of Gavin’s ENT to visitJacksonville to get anotheropinion. After meetingwith the surgeon, we knewthis was the guy for thejob. He had recommendedan aggressive plan, butmost of all, we wereconfident in his abilities.

On August 8, 2003, westarted the first stage ofsurgeries for Gavin. Theplan was to release his jawand put in distractiondevices to help give Gavinthe room he needed toallow his upper and lowerjaws to move.

After six and a halfhours, Gavin came throughthe surgery without anycomplications. The doctorswere able to insert thedevices, release Gavin’s jawand were able to build anew TMJ, which he wasborn without.

The coming months werefilled with painful therapysessions and doctor’sappointments. Gavin’s jawwas moved 22mm downand 25mm forward. Hehad more movement thanwe could have hoped forbut still not enough toallow him to chewnormally. Gavin can closehis mouth but not open it.

With the first stepbehind us we moved toour next objective — get-ting the trach out. Whilethe surgeon was confi-dent, the ENT was muchmore skeptical.

On August 2, 2004,Gavin went in for anexploratory procedure todetermine whether thetrach could be removed. Ifthe findings during thisprocedure were positive,then the next step wouldhave been another sleep

gavin, from page 1

faith, love and patience go a long way.

“stryking” up a wonderful friendship

cCA in the USA sends a heartfelt thanks to StrykerS.A. in Europe.

We were contacted by Suzi Williams, HR Coordinator andEvents Committee Member to confirm a donation of CHF3,260 (Swiss Francs – approximately $2,700 US dollars)!

The amount was raised as a result of a tombola (a lotterydrawing) held at their Fire and Ice-themed Christmas Eventon Friday, December 17, 2004. CHF 1,630 was raisedthrough ticket sales, and Stryker kindly agreed to match theemployee contribution. Needless to say, we were surprisedand thrilled with such a generous donation. It speaks to thefact that craniofacial conditions are known all over theworld, and it’s apparent that generous, caring folks are too!We are grateful CCA is able to communicate worldwide forhelp representing and advancing CCA’s mission and vision.On behalf of all our children and families, “Thank you tothe employees and management at Stryker!”

5

gavin’s dad helps raise $600 for cca

one might say Gavin’s Dad, Ruben Trevino, madepeople dig deep into their “denims.” Only a short

time after recovering from Florida’s 2004 hurricane season,the good folks at Fiserv in Lake Mary, FL, held a DenimDay, raising $600 for CCA! During a Denim Day, employ-ees donate to dress down for a day, wearing jeans orcasual dress not otherwise allowed under their companydress code. It’s a great way to raise funds — and fun!Another great thing about the Denim Day held by Fiserv is the awareness it created. Ruben found a number of co-workers are also touched by craniofacial conditionsthrough family or friends. Gavin and CCA have manyfriends in Florida. Thank you all!

more friends help raise funds for family

when we appeal for funds, we know it’s a fact peo-ple like to give to a cause they can somehow relate

to. For CCA it’s most often folks who know our kids per-sonally who support us. CCA families and friends are oftenour most ardent advocates.

Robert Muller, Zach’s dad, has friends who donatedthrough Bonner’s Pub in Bayonne, NJ. Patrons and Pete and Danny Bonner, the pub’s owners, togetherwith Tommy Straus, owner of Ultra Contracting whomatched funds, raised a $100 donation for CCA to helpkids like Zach, who struggle with the challenges ofcraniofacial conditions.

A big THANK YOU to all who pitched in at the pub!

2005 calendar of eventsdate event web siteApril 3 Cut-a-thon www.CCAKids.org

Dallas, TX (see article at left)

April 9 American Cleft Palate-Craniofacial www.cleftline.orgAssociation — Connections 800-24-CLEFT(conference for families)Myrtle Beach, NC;

June 23–26 Children’s Craniofacial Association www.CCAKids.org15th Annual Cher’s Family RetreatNashville, 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

cut-a-thon – dallas

salon D and CCA are teaming up for a cut-a-thonfundraiser on Sunday, April 3, 2005, in Dallas,

Texas. Salon D’s top stylists are opening their calendarsfrom 12:00 to 6:00 p.m. to give you, your family and yourfriends the amazing new hairstyle you’ve been waiting for!

Please join us for an afternoon of wine, hors d’oeuvres,fabulous door prizes and fresh, new styles. We are askingfor a minimum donation of only $25 per haircut, withthose donations going to help CCA kids and families.

Salon D • 13615 Inwood Road, Suite 160 • Dallas, TX 75244

972.788.0975 • www.salond.com

microtia varies fromthe complete

absence of auricular (outerear) tissues (anotia) to asomewhat normal but smallear with a narrowed canal.Between these extremes,one finds an endless varietyof vestiges, the most com-mon being a vertically-ori-ented sausage-shaped nub-bin (figure 1). Microtia isnearly twice as frequent inmales as in females, andthe right-left-bilateral ratiois roughly 6:3:1.

Children will discoverthat they are different ataround age three to threeand a half. Classically, theparents find their childcomparing sides in front ofthe mirror. They begin torefer to the microtic ear astheir “little ear” or “closedear.” It is best to agreewith the child that theywere born with one big earand one little ear and,when they are older, thelittle one can be madelarger to match the other.Then they should betreated absolutely normally,without making a fussabout the deformity.

The first big psychologi-cal trial manifests in aboutthe first grade in school,when children are continu-ally exposed to a largegroup of their peers for thefirst time. Self-awareness is

heightened as they begincomparing each other andforming a real concept ofbody image. This is whenname-calling and teasingbegins, and the microticpatient learns what itmeans to be “different.”

The “second round”comes with adolescence,when everyone is conform-ing to peer pressure to beaccepted. This is the era ofour lives when looksbecome very important andeveryone wants to “fit in.”Teenagers with microtia arevery self-conscious aboutbeing different and areparticularly motivated tohaving the ear repaired.They are also very criticaland may have unrealisticexpectations of what canbe surgically produced.

In addition to holding upour eyeglasses and funnel-ing sounds towards our eardrums to improve hearing,ears make us look betterand feel much better aboutourselves as a wholeperson. This is the drivingreason for surgical creationof the outer ear. Far frombeing cosmetic surgery,repairing a congenitaldeformity permits a personto have a normal self-image, a normal life and tobe a normal, productivemember of society.

The age at which anauricular constructionshould begin isgoverned by bothpsychological andphysical considera-tions. Since the bodyimage concept usuallybegins forming aroundthe age of four or fiveyears, it would be idealto begin constructionbefore children enterschool. However,surgery should bepostponed until ribgrowth provides substantialcartilage to permit a qualityframework fabrication,which is rarely before theage of six.

Psychological and emotional benefit

The impact of microticdeformity on patient andfamily sequentiallybecomes greater as thechild enters school,approaches adolescenceand reaches adulthood.

Before 10 years of age,64.8 percent of familiesrated the deformity’simpact as “moderate” to

“severe,” whereas this fig-ure jumped to 77.6 percentin ages 10 to 14 and 86.7percent in patients olderthan 15. In ages six to 10,where 35.2 percent offamilies rated the impact asbeing only “mild,” thesesame families often statedthat the full impact hadnot yet been realized andthat they sought surgery“not to solve a currentproblem but to prevent afuture, anticipated crisis”as their child grew older.

6

microtiaby Burt Brent, M.D.

Figure 1Variance of the microtia deformity.Grade I, II, III microtia and anotia (complete absence of any ear remnant).

Emotional Impact of Unrepaired MicrotiaRated by Patient and Family. Authorís Series of 1,000 Cases.

Age (Years) Severe Moderate Mild

5-10 18.6 % 46.2 % 35.2 %

11-14 16.3 % 61.2 % 22.5 %

15-20 26.7 % 60.0 % 13.3 %

21-62 44.1 % 41.2 % 14.7 %

continued next page �

Facial Deficiencies A significant percentage

of microtic patients exhibitdeficient facial compo-nents. Appearing as aflattened side of the face,this condition is known ashemifacial microsomia, andis basically an underdevel-opment of the bony jawsand overlying soft tissues.

Associated branchial archdeformities were common:36.5 percent of patientshad obvious bony and/orsoft tissue deficiencies,making the side of the faceappear flattened or distort-ed. Of these, the familyperceived the facial defor-mity as “significant” in49.4 percent of the cases.This obvious facial asym-metry is usually dealt withafter the auricle is repaired.

From my years of long-term observation of manypatients, this asymmetrydoesn’t seem to worsen asthe child grows but insteadgrows proportionally in itsrelation with existing facialfeatures. This has beenborne out by a recentgrowth analysis investigation.

Overt facial nerveweakness was found in15.2 percent of my 1,000microtia patients, causing aweak smile or inability toclose one eye completely.Of these, 42.6 percent hadinvolvement of more thanone nerve branch (Table 2).

Kidneys and Urinary TractUrogenital tract abnor-

malities increase in the

presence of auricular defor-mities [104], particularlywhen the patient is afflict-ed with other manifesta-tions of facial underdevel-opment [103]. Several ofmy patients have hypospa-dius or vaginal agenesis,and 4 percent have provenabnormalities of their col-lection systems, whichinclude horseshoe kidney,ureteral duplication, unilat-eral renal agenesis andpelvic kidney.

However, because thebody has enough “reserve”to easily live with just onekidney, I have yet to seeany microtia patient sufferany life-threatening renalconsequences from thesesystem abnormalities. Aroutine screening of theurine may detect silenthematuria or proteinuria,but as likely will shownothing. Recurring urinarytract infections in microtiapatients prompt renalfunction studies, and oneshould start with a renalultrasound before consider-ing more invasive techniqueto detect these deformities.Because of the increasedincidence of urogenitalabnormalities in microtiapatients, one mightconsider screening all ofthem with ultrasound.

Cervical (Neck) SpineCervical spine anomalies

are more common inmicrotic patients if other“midline defects” exist,such as cardiac or renal dis-

orders or cleft lip andpalate. Because associatedneurologic symptoms arerare, the frequency ofthese vertebral abnormali-ties are probably underesti-mated in patients withmicrotia. GoldenharSyndrome is a condition inwhich the microtia patienthas an ocular dermoid andusually has cervical verte-bral abnormalities.

When one notes anocular dermoid or detectslimited range of neckmotion in any microtiapatient, one should investi-gate the renal function andevaluate the cervical spineas well. Regarding the lat-ter, CAT scans will provideuseful information for anyphysician caring for thesepatients. It is particularlywise to bring this conditionto the anesthesiologist’sattention during any kindof surgery, so that unusualneck manipulation isavoided during inductionof anesthesia; the child’s

head should not be forciblyturned, but instead, thehead, neck and bodyshould be “log-rolled” as a unit for any turningmaneuvers during surgery.

If there is any suspicion ofneurological disturbancesseen in these children, theyshould undergo CT scan,MRI and appropriateneurologic examination.

Other Associated Problems:Cleft Lip/Palate and Heart

Cleft lip and/or palate isseen in 4.3 percent of mypatients, and 2.5 percenthave cardiovascularmalformations. The latterhave included atrial andventricular septal heartdefects, dextrocardia,transposition of the greatvessels, three-chamberedheart and patent ductus. If any of these heartproblems are noted, thepediatrician should consultwith a cardiologist forappropriate steps inmanagement.

Table 2 - Associated Deformities Author’s Series of 1,000 Microtia Patients

Branchial Arch Deformities

A. Obvious Bony and Soft Tissue Deficit 36.5 %Family perceives it as “significant” 49.4 %

B. Overt Facial Nerve Weakness 15.2 %Of these, more than one branch involved 42.6 %

Macrostomia 2.5 %

Cleft Lip and/or Palate 4.3 %

Urogenital Defects 4.0 %

Cardiovascular Malformations 2.5 %

Miscellaneous Deformities 1.7 %

7

David Dellucci; FriscoRough Riders shirts, ticketsand caps; an autographedpicture of the DallasMavericks and a NolanRyan-autographed baseball.

Of course, the highlightof the party was seeing thejolly old man himself,Santa Claus (Mike Lorfing),who arrived on a hook andladder fire truck brought inby the Plano, Texasfirefighters. Each childhad their picture takenwith Old St. Nick and went

home with a special gift aswell as a keepsake pictureframe that they designed.

CCA thanks all the vol-unteers and donors whomade the party special.

cCA, together with theCraniofacial Center

at North Texas Hospitalfor Children, Dr. JeffreyFearon, Dr. KennethSalyer and Dr. DavidGenecov, hosted itsfifteenth annual holidayparty in Dallas, TX, onSaturday, December 11,2004. Around 500 kids,moms, dads, doctors andother craniofacial teammembers gathered for anafternoon of holiday cheer.

Radio Disney DJsenthusiastically emceed theevent and led partygoersthrough an afternoon offun and games, includingholiday crafts, cookie deco-rating and face painting.Partygoers met andreceived autographed

pictures from the DallasDesperados Cheerleadersand Texas Ranger Hall ofFamer, John Wetteland.The Fort Worth Cats andTexas Ranger mascotsalso treated them with asurprise visit.

Families went home withwonderful door prizessupplied by a variety ofDallas and surrounding areabusinesses. Prizes includedImax, AMC and Cinemarkmovie tickets as well as SixFlags amusement parktickets. Donated sports prizesincluded a baseball cap auto-graphed by Texas Ranger

8

cca dallas

2004 holiday parties!

9

once again, a group ofCCA kids and their

families gathered inKenosha, WI, at TheParkway Chateau/BratStop for a visit with Santa(Ron Luke) – and with oneanother. The good folks atthe Parkway Chateau pro-vided the hall at no cost,and we received generousdonations from ErmaGorecki (Robbie’s grand-ma) for toys and fromOrvind & Susan Solvangand Hillcrest PlymouthLLC (in honor of MeekaRowat) for refreshmentsand other expenses.Wendy Niemi-Zastrow,

Meeka’s mom, helped JillGorecki with the partyplanning, and everyonethere joined in with craft-making and assisting Santain giving out pre-Christmassurprise bags. Specialthanks too to “Mrs.Santa,” Pat Mehigan fortaking photos. Nurseclinician Peggy Buchholzfrom Children’s Hospitalof Wisconsin lent hersupport by attending aswell. Jill reports the CCAgroup in the Midwest isgrowing in numbers andthat everyone had a greattime together!

cca midwest

10

for three glorious days inJuly, 28 of the families

that make up our extendedFNMS Family were gath-ered at the Flying L GuestRanch just outside of San Antonio, in beautifulBandera, Texas. Ourmembers came from allover the globe, from places as far away as NewZealand, Germany, Polandand Greece, to renew old friendships, form newones and share ourcollective stories.

The official kickoff wasFriday morning at breakfast,and the wonderful sightthat greeted me thatmorning will stay with mealways. Many of the youngchildren were wanderingthrough the large diningarea, sizing up new friendsand greeting families. LittleMaria-Nefeli Athanasiouof Greece was walkingaround and shaking handswith nearly everyone, eventhough she does not speaka word of English.Watching all of these littlepeople become so animat-ed together in such a shortperiod of time was trulyamazing.

Breakfast was followed byone of the weekend’s mainevents, the FNMS CowboyOlympics! Everyone loaded

up on the hay wagons forthe ride out to the arena.These fun team events weremodified by the wonderfulstaff of the Flying L just forour group.

Saturday’s schedule wasdesigned to give ourfamilies time to enjoy allthe ranch and surroundingregion had to offer. Somefamilies chose to enjoy atrail ride, some chose toplay in the pool and somewent into town to shop.Others used the opportuni-ty to sign their childreninto the kid’s activity campin order to attend theparent mini-conference onmedical issues. This round-table discussion enabledparents to freely exchangeideas and information onnew procedures, medicalequipment and issues thatconcern our children.

Saturday afternoonoffered another of theweekend’s highlights, theFNMS Karaoke and IceCream Social. I must tellyou that although it didtake some persuading toget our first participants upto the stage, once they hadfinished their outstandingperformance, there wereno longer a shortage ofvolunteers.

The fun kept on rolling onSaturday night, as everyonecaught the hay wagonsdown to the creeksidebarbecue for dinner. Thefood was delicious, the set-ting was gorgeous and thecompany was fabulous.Dinner was followed byanother special treat.

Mr. Kevin Fitzpatrick,the most extraordinary trickroper, held audience on thetennis courts. This man notonly possesses amazing rop-ing and horsemanship skillsbut also a charming witthat kept the crowd laugh-ing and thoroughly enter-tained for more than anhour. I will never forget littleCallie Dahl’s great pleasureat being tricked by Kevin;the laughs and smiles thatpoured out of her wereabsolutely contagious.

The day came to a closearound the campfire with

s’mores and good conver-sation.

Sunday morning broughtthe festive weekend to aclose with our farewellbreakfast and photoescapade. It was anamazing, life affirmingexperience for me, and Iwas very sad that it hadcome to an end.

However, I now feel agreater sense of communityand connectedness with allof our member families,both those that werepresent and those that werenot. I feel so thankful for allof our terrific volunteers likeAlexa Larsen, Andy VanQuill, Beth Russell, EileenAtkins, Peter McNultyand Nina Restivo. I nowknow the importance ofwhat Margaret Ieronimo– along with the help ofeach of you – has created inFNMS. Thank you all.

we are family2004 FNMS Family Conference

The Foundation for Nager and Miller Syndromes

(FNMS) is an international support group dedicated to

helping those affected by these two similar genetic

conditions, which involve severe facial and limb anomalies.

For more information, visit their Web site at

www.fnms.net or email at fnms4u@ameritech.net.

the organization that laysout specific goals and stepsto reach those goals. Themechanism for implement-ing that plan is a muchexpanded committeestructure.

Working within thecommittees, volunteers areasked to concentrate onareas in which they haveexpertise. This approachallows a group of volun-teers to concentrate on aspecific area and takeownership of the results.

Here are our currentcommittees:

Programs: This is thecommittee that touchesfamilies most directly. Itdevelops informationalmaterials, such as our seriesof syndrome books. TheAnnual Family Retreat andother events around thecountry are the responsibili-ty of this committee.Forming affiliations withother groups that share ourissues is also a focus. If youhave a little time and wantto help families directly, thisis the committee for you.

Development: We can’tpublish booklets, holdevents or even keep ourWeb site functioning with-out money. Do you haveexperience in fundraising?If so, the DevelopmentCommittee needs you.Fundraising can take placeon the local, regional ornational level. What areyour ideas?

Marketing: This is thecommittee that takesCCA’s vision to the world:“All people should beaccepted for whom theyare, not how they look.”The Marketing Committeeprovides the words andimages to tell the story ofcraniofacial patients andtheir needs. If you are anatural marketer orcommunicator, join up!

Governance, Finance & Audit: CCA is an organi-zation with a heart, but itis also an organization witha brain. We must run ouroperation like a business.These committees arefocused on efficiency,effectiveness, and responsi-bility. If you have experi-ence in the business worldor other associations, wewant you.

Advocacy: Are youangry that craniofacialpatients often have to fighttooth and nail to get ade-quate health insurance cov-erage? Well, stay mad andjoin this committee. We’repressing forward on severalfronts to bring fairness tofamilies who so frequentlyare denied the benefitsthey need and deserve.

We are grateful for all ofour volunteers and lookforward to moving CCA toa higher level with theirexpertise. With your help,2005 will be a banner year.

Tim Ayers, Board Chair

If you feel you have skills thatwould benefit CCA, please call800-535-3643 and ask for avolunteer application.

11

chair, from page 1

financial assistance

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

financial assistance program that will help with food,travel and/or lodging. Call CCA for an application at800-535-3643. All we ask is that you apply at leastfour to six weeks prior to your next trip.

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 Jana Butera at 800-535-3643 or emailjbutera@ccakids.com

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

ccaprograms

download the newsletter

if you are currently receiving the newsletter by mail, butwould rather download it from CCAKids.com, let us

know. The online version is in full color!

Watch our web site for the next CCA Motorcycle Raffle!

If you would like to sell Harleyraffle tickets call Annie

at 800-535-3643

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

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:Jana Butera

Development Director:Jill Gorecki

Office Administrator:Annie Reeves

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

NONPROFIT ORGU.S. POSTAGE

PAIDDALLAS, TX

PERMIT NO. 555

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

RETURN SERVICE REQUESTED

If you no longer wish to receive thisnewsletter, please email your wishesto JButera@CCAKids.com or mail thelabel to the CCA office and ask that it be 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.

K-K-K Katie…

three Cheers for Katie’sClothes Bin, a thrift

store in the small town ofHallstead, PA. Named fortheir daughter Katie,Laurie and JohnBovenkamp saw a needfor a shop in their townwhere gently used itemscould be purchased at rea-sonable prices, helpingeveryone involved.

In 1996, the Bovenkampfamily including Laurie,John, Katie (now 16), herolder brother John (18) andyounger brother, Andrew(13) attended the CCACher’s Family Retreat inChicago, IL. They had agreat time and still valuethe experience.

Since the store openedthey’ve been “giving back”

to CCA through a 10%donation (more than$500 in 2004, evenwhen there are some-times no “profits” todraw from). Laurieexplains to customerswhy there is a photoof Cher in the shopand how their liveshave been touchedthrough CCA. Everyoneseems to know Katie, whoruns the register for hermom from time to time.

Katie, born with ApertSyndrome is an active teenand an inspiration. TheBovenkamps raise funds forCCA while helping othersmake ends meet. Weappreciate their generousdonations.