messagefrom theexecutivedirector

with the year nearlyhalf over, CCA

continues to be focusedand working toward ourgoals. Finding ways tobetter serve our families’needs requires having cleargoals and having a clearpath to achieve thosegoals. To that end, the CCABoard of Directors and staffmet in January in FortWorth, Texas, to assess2006 accomplishments anddetermine goals andobjectives for 2007.It is important for CCA’s

leadership to cometogether, once a year

ccanetwork

empowering and giving hope to facially disfigured individuals and their families

newsletter of the children’s craniofacial association Cher — honorary chairperson spring 2007

see chairman, page 10

olivia and I are spending a rainy March Friday morningat Children’s Hospital of Philadelphia (CHOP). We

managed to schedule three appointments all in onemorning. Many long days are spent here at CHOP, as CCAfamilies know only too well! While we are waiting to beseen, we thought this would be a great opportunity to tellOlivia’s story.Olivia is 13 years old and was born on Friday, October 13

1993. She even turned 13 on Friday the 13th of October.We are not superstitious at all though!She was a full-term healthy baby girl born with great big

blue eyes. It turns out that those great big blue eyes were atelltale sign of something that was not diagnosed untilOlivia was four years old.

see olivia, page 6

getting to knowoliviaBy Karla Dean

We wish to thank Bally’s,a corporate sponsor, for helpingto fund the CCANetwork.

Please consider a corporatesponsorship. Contact JillGorecki, JGorecki@CCAKids.com

insidecca kidbryttani gore. . . . . . . . . . 2

cca teenquentin zaengle . . . . . . . 3

cca supersibsannalise & lea zaengle . . 4

donor in the spotlight . . . 5

craniofacial awarenessmonth . . . . . . . . . . . . . . . 7

anthropology andcraniofacial anomalies. 8-9

in memory ofpauline burzio . . . . . . . . . 9

calendar of events . . . . 10

fundraising . . . . . . . . . 11

fundraisingnews . . . . . . . . . . . . . . 13

regional volunteers . . . . 14

donors . . . . . . . . . . . . . 15

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

eight-year-oldBryttani Gore is a

second grader who lovesreading, math and writing.After school, you can findher playing games, gettingcreative with crafts, orenjoying a good book. Shealso loves spending timewith Abbey, her halfbeagle/half Germanshepherd dog.One of Bryttani’s hobbies

is collecting. She hascollections of water globes,piggy banks and porcelaindolls. She and her momalso have a big collection ofBarbie dolls that is only to“look at, not touch.”Bryttani likes to watch TV

shows, including “Dora theExplorer,” which is “cool,”“Go Diego Go,” “LazyTown” and “Sponge Bob.”Her favorite, however, is“Madeline.”Her all-time favorite movie

is “Annie.” In fact, she’sseen the movie 11 timesand knows all the words tothe song, “Hard-KnockLife.” For her birthday lastyear, her family surprisedher by taking her to see the

At left: Bryttani Gore in her second grade photoBelow: Bryttani through the years

play Annie at a nearbytheater. It was openingnight, and Bryttani dressedup in her Annie dress andshoes. She got a hugesurprise when the lightswent out, the curtain wentup and she started to hearthe songs she loves. Afterthe show, she got theautograph of the girl whoplayed Annie.Last October, Bryttani

participated in the SpecialOlympics of Delaware,where she won a goldmedal for individual soccerskills. In January, she won asilver medal for bowling,and in March, she wonanother gold medal forindividual basketball skills.Bryttani went to her first

CCA retreat in 2004, whereshe had fun and made a lot

of friends. She and herfamily look forward togoing to CCA’s next retreatin the summer of 2008.Bryttani was born with a

facial cleft and is missingone of her eyes. However,she has a tremendouslypositive outlook on life, andshe offers some goodadvice for other kids withcraniofacial differences.Bryttani believes that sheis special because Godmade her special;therefore, she believes thatothers in similar situationsare just as special, too. Withher positive attitude, shealways gives anyone extraencouragement, tellingthem that they can do itbecause she knows theycan.

meet bryttani gore

ccakid2

my name is QuentinZaengle, and I am

14 years old. I was bornMarch 1, 1993.When my mom was

expecting me, she and mydad didn’t know I hadApert syndrome. My momhad a few ultra-soundsbecause they thought myhead looked different, butthe more ultra-sounds thatwere done, the more thedoctors thought everythingwas ok.After being in labor for

more than 24 hours, mymom was told she neededto have a C-section. WhenI was born, the OB/GYNthat delivered mespecialized in genetics andknew right away I hadApert syndrome.That night I was rushed

to Children’s Hospital ofPhiladelphia (CHOP), whereI spent two weeks beingevaluated by a team ofdoctors. I had my firstforehead advancementsurgery when I was fivemonths old. I had severalsurgeries on my handswhen I was between oneand two years old.

quentin’s story

When I was 1 1/2, I hada spinal fusion surgerybecause I had Kyphosis. Ispent nine months in a fullbody brace. I had manyminor surgeries after that.My next forehead surgery

was an emergency twoweeks before Christmaswhen I was in first grade.Luckily, I came homeChristmas Eve, just in timefor Christmas.My one and only mid-

face surgery was thesummer going into secondgrade, where mycraniofacial surgeon, Dr.Scott Bartlett, insertedinternal distracters and myparents turned them with akey. My parents tookpictures of me every daysince my profile changedwith each turn.I’ve had surgeries since

then, but they were minorcompared to my mid-faceoperation. My parents areso grateful for all mydoctors and surgeons atCHOP, especially Dr.Bartlett, who has donewonders for my face andmade me “one handsomeguy” as my mom alwayssays. In April 2003, Dr.

Bartlett even invited mymom, dad and me tospeak at CHOP’s largestfundraiser, Daisy Day, atthe Bellevue-StratfordHotel in Philadelphia. Heshowed some before andafter pictures of me, andmom and dad spoke onstage to tell my storyduring a luncheon. I evengot to talk, too.I attended Gwyn Nor

Elementary School, where Iwas mainstreamed with allmy classmates. I then wentto middle school, where Iam mainstreamed for allmy minor classes; my majorclasses are taken inlearning support.I have always liked

school, and I especially likemiddle school. When Igraduate I want to go tocollege to be an historian. Ilike reading history factsabout countries, kings andqueens. I also like readingbiographies and learningabout people in history.When I am older, I want totravel to other countries.In my spare time, I read a

lot of history books andGoogle history dates. Ireally like to play computer

games. I like to visitmuseums. I play soccer andbaseball, and I like to playkickball outside with theneighborhood kids.I am also a Boy Scout. I

recently earned myTenderfoot rank. I also likecamping with the BoyScouts. I just got picked tobe the troop historian, so Iget to take pictures on ournext trip and maybe helpwrite an article for thescout newsletter.A few summers ago, I

took a kayak lesson withmy two sisters and mycousins – it was so muchfun! I get to kayak at myMema and Bepa’s who livein Pawling, NY. I likevisiting them a lot becausethey live out in the country.They live near a lake, andthey have kayaks andpaddle boats that we getto use when we visit in thesummer. We fish there,too. Last year I caught abass and a pickerel.I especially like to just be

with my family and do funthings with my mom, dadand two sisters Annalise,who is 13, and Lea, who is10.

3

Quentin Zaengle

ccateen

i’m Lea Zaengle and I’m10 years old, and my

sister, Annalise, is 13 yearsold. Our brother is Quentin,and he is 14 years old.Quentin makes us laugh

with all the history facts heknows. When we play triviagames, Quentin knowsmost of the answers. Someday he wants to be anhistorian, and he shouldbecause his favorite hobbyis to Google history datesand learn facts.Our favorite thing to play

with Quentin is kickballwith the neighborhoodkids in our front yard. Weenjoy watching movieswith Quentin and joininghim on the couch whenhe’s watching his favoriteshows—anything on theHistory Channel orDiscovery Channel.Annalise plays soccer

for the township and Iplay volleyball andsoftball for her school.

Both of us swimcompetitively on summerand winter swim teams,and this year we areplaying water polo andreally like it. Quentincomes to our matches tocheer us on, and we hearhim yelling from thestands, especially when weget dunked. We’re goingto miss our last matchbecause we’re going to seethe play, “Wicked,“ in NewYork City with our cousinsand are staying at ouraunt’s bed and breakfast.We go to Mary Mother

of the Redeemer school.Annalise is in seventhgrade, and I’m in fifthgrade. We’ve never been inthe same school as

Quentin, so sometimes wehave to explain to ourfriends that Quentin is abrother who has Apertsyndrome.One day a year the three

of us get out of school togo with our Dad to hisoffice for “Bring Your Kidsto Work Day,” and we likethat a lot. Our mom ownsa Paint Your Own Potterystudio with her sister, andsometimes Annalise helpsout with birthday parties.We’ve been thinking aboutdoing a fundraiser forCCA, too.We love going to the

yearly CCA retreats, wherewe have met a lot of goodfriends. We have attendedthe last four retreats andare looking forward to thisyear’s retreat in Salt LakeCity, so we can seeeveryone again. There arelots of traditions we enjoy,like when Andrew singsCher’s song at the dinnerdance and the ice creamsocial. Our family is alsoplanning to stay a fewextra days so we can

sightsee and visit some ofthe national parks.We were too young to

know what Quentin wentthrough with most of hissurgeries, but Annalisedoes remember when hecame home Christmas Evewith his eyes swollen—thatsurgery was his secondforehead surgery when hewas in first grade. Annalisewas five years old.We are lucky to have him

as our brother. He adds aspecial element to ourfamily. Even though wehave our usual siblingfights, we are always therefor Quentin when someoneis not being kind to him.Our parents always

notice how accepting weare of people withdifferences and that we arecaring too. We’re sure a lotof that comes from havinga great brother likeQuentin and meeting somany different peoplethrough CCA.

meet annaliseand lea zaengle

ccasupersibs4

Lea and Annalise Zaengle

jamaica!

good newsrobbie Gorecki has graduated from MMI, Phoenix, AZ

(Motorcycle Mechanics Institute), successfully

completing the Harley-Davidson Late Model, Early Model

and the Dynojet Operations I portions of the Motorcycle

Technician Specialist program. Congratulations Rob!

donorsin thespotlight

children’s

Craniofacial

Association highlights

the kindness of donor, Courtney Vincent. Courtney is an

Adapted Physical Education teacher (PE for mentally or

physically challenged children). She found out about CCA

at a Cher concert and took up the cause. She tells us,

“Any child who has some type of obstacle to overcome

has a special place in my heart.” Courtney donates

monthly with automatic credit card contributions. Her

ongoing support is why she is this issue’s ‘Donor in the

Spotlight.’ Thank you Courtney!

5

dealynn is the winnerof CCA’s Jamaica

raffle! She wins acomplimentary trip set upby our friends at LibertyTravel in Philadelphia to flyAir Jamaica into Montego

Bay, Jamaica for a 4-day/3-night stay at the CoyabaBeach Resort, including aset of His/Hers luggagedonated by Levinthal'sLuggage of Philadelphia.The winning ticket was

drawn by Anita King atAscendix Technologies,located in the neighboringsuite to Children’sCraniofacial Associationoffice headquarters.Dealynn lives in Rexford,

Montana and purchased30 tickets from NatalieWardlaw's mom, Jennifer.

Speaking of selling raffletickets, the Grathofffamily of CommerceTownship, Michigan is ourwinner for high ticketsales. They will receive a

The GrathoffFamily:

Bob, Ann, Jon,Allie & Emily

package of goodiesincluding specially chosenitems from our web storealong with a $50 gift cardto Target. Congratulationsand thanks!

The effortcollected

over $5,000in funds forCCA! Thanksto everyonewho boughtand / or soldraffle tickets.

congratulationsdealynn boom

6

It was brought to ourattention by a relative thatOlivia’s appearance wasdifferent. With onlyspending 10 minutes in theGenetic Department atCHOP they were able to tellus that Olivia had Crouzonsyndrome. After herdiagnosis, we completed aseries of tests and werethankful to find out thather case was very mild. Thisis why it was missed tobegin with. Olivia did havecrainosynostosis that wasdetected with no cranialpressure.Six months passed, and

we came to this very place(CHOP) for a routine eyeexam. To our surprise theophthalmologist detectedthat Olivia could not seeanything from her righteye. She had a normal eyeexam at her pediatrician sixmonths prior to this visit.This came as a shock to allof us.

That same day,we had anappointment withour plasticsurgeon. When Itold him theoutcome of Olivia’seye exam hebecame veryconcerned andsent us directly upto meet aneurosurgeon.After an exten-

sive medical work-up, Olivia wasscheduled foremergency surgery.

The craniosynostosis cameinto play and caused cra-nial pressure. The rightoptic nerve had beensqueezed; blindness of herright eye was the result ofthe pressure. She had alsodeveloped a ChiariMalformation, which alsowas a result of the pressureto her brain.I’ll never forget discussing

Olivia’s surgery options withher neurosurgeon as heproceeded to show us anX-ray of Olivia’s skull tohelp us understand. Being aCT scan technologistmyself, I am familiar withX-rays. The appearance ofOlivia’s skull resembled thatof bubble wrap; it did nothave the normal smoothbone appearance. Thisquickly brought us torealize how serious thisreally was and how muchpain Olivia had to beenduring.Just four days from the

time she was diagnosedwith blindness, we wereprepared for her surgery. It

all happened so fast, andmy husband Bill and I weremostly numb through thewhole process. Her surgeryconsisted of threeprocedures. Herneurosurgeon and plasticsurgeon released the cranialpressure by opening bothher coronal and sagitalsutures. They did somereconstructive work to herorbital margins to make hereyes appear smaller. Then,last but not least, theyremoved a small part ofskull at the base and partof Cervical 1 (C1) to allowthe Chiari to dangle freely.Olivia came out of this

nightmare without anycomplications. Four daysafter her surgery, sheactually walked out of theICU department with ateddy bear under one armand the other hand wasused to keep open aswollen left eyelid so shecould see her way out.Home we went!We were hopeful

of her regainingpartial vision to herright eye. We didmany hours of eyepatching but withno success. Thedamage to theoptic nerve wasdone.The only other

major surgery Oliviawill need is hermid-faceadvancement. Weare planning topossibly have thisdone next summer,before she entershigh school.

Our family was intro-duced to CCA by DianaSweeney, a liaison forplastic surgery at CHOP.Diana was such a tremen-dous source of help andcomfort to us at a veryscary time.Our first CCA retreat was

in Atlanta. This was by farthe best experience ofour lives as a family. Thefriends we have madethrough CCA could neverbe replaced. Being able toconnect with families thatare dealing with issuesmuch larger than ours hashelped us realize just howblessed we really are.Knowing how mild Olivia’ssyndrome is compared tochildren we have metthrough CCA just helps uskeep everything inperspective. Olivia hasteenager, and I believeCCA has done much tocontribute to this.

olivia, from page 1

continued next page �

Olivia at nine months old

Olivia at three years old – still not diagnosed!

7

Olivia has anolder sister andbrother, Leahand Jordan,who keep avery protectivewatchful eyeout for theirbaby sister.Olivia is atypical teenagerwho is alwayson the go! She loves tospend time with her manyfriends and family. Sheattends a small parochialgrade school and has beenwith most of her friendssince kindergarten. Therehas never been anacceptance issue becauseof her appearance sinceday one. Her friends neverreally have viewed Olivia asbeing different. She is inseventh grade and is astraight “A” student whoworks very hard.If she is not on the

computer, listening tomusic, reading, watchingmovies, cooking with her

grandmother or goofing offwith her friends, you canbe sure to find herdancing! This is Olivia’spassion. Olivia has takendance lessons of all typessince she was six years old.She currently takes moderndance and ballet lessons.Growing up in Philadelphiahas given her manywonderful danceopportunities.Well, our morning is

coming to an end at CHOP,and we are making goodprogress. We left the ENTDepartment and areheaded to Orthodontic/Plastic Surgery. Olivia willbe receiving an even

brighter smiletoday—shebegins the firstphase forbraces.Hope to see

you all in SaltLake City withour brightestsmile ever!

craniofacial acceptancemonth

Beyond the Face is a Heart

this year marks the third year CCA will observe

September as Craniofacial Acceptance Month across

the nation. CCA families, friends, volunteers and related

support groups will be widening the circle of acceptance

of individuals with facial differences. The goal is to create

awareness that beyond the face is a heart and the true

person within.

In addition to raising awareness and acceptance, CCA is

raising funds to support programs and services available to

all individuals with facial differences as well as their

families. Besides the ideas for raising funds mentioned in

this newsletter, CCA has dedicated a specific plan for

September’s observance, which will be fun and easy for all

families and friends to try.

We hope you will join this important effort! Please

contact CCA about raising funds while educating the

public. Call 800-535-3643 or email Jill at

JGorecki@ccakids.com.

Olivia at twoyears old

Olivia at twelveyears old withtwo friends atthe 2006 retreatin Hershey, PA.All three girlshave beendiagnosed withCrouzon’s.

children withcraniofacial anomalies

show a wide range ofcranial and facial features.For a surgeon whose goalis to reconstruct the headsand faces of these children,it is very important tounderstand as precisely aspossible what kind ofproblems they are dealingwith, what the results oftheir surgical proceduresare and how these childrengrow, so they can producethe best results possiblefrom these surgeries. All ofthis requires some way ofmeasuring the heads andfaces of their patients.

Taking measurementsThere are many ways to

take measurements. Themost common iscephalometry, takingmeasurements from x-rayfilms. This is standardpractice in orthodonticsand jaw surgery.Measurements can betaken from both 2-D and3-D CT scans and new 3-Dcamera systems that allowmeasurement of surfacedimensions of the facefrom computer-generatedimages. All of thesemethods of measurementhave developed from amuch older system ofmeasurement known asanthropometry.

What isAnthropometry?Anthropometry is the

measurement of thehuman body and its parts,which includes the headand face. The techniquewas invented more than350 years ago and is thefoundation of all latersystems of measurement.Anthropometry wasinvented by a Germananatomist named JohannSigismund Elsholtz whenhe was a graduate studentat the University of Paduain Italy. Elsholtz wasinterested in studying thesymmetry of the humanbody but there were noinstruments or standardtechniques to do this, sohe had to create them. Heinvented an instrument hecalled an anthropometron.This was a vertical rodwhich he divided into sixequal parts he called pedis(feet). He then subdividedeach foot into 12 equalparts he called uncias(inches). Elsholtz finishedhis device by attaching ahorizontal slide to this rodand mounting the wholething on a wooden base.

The examinationAn anthropometric

examination is relativelysimple, inexpensive andnon-invasive. To beaccurate, it should be

performed by someonewith training in thetechniques, preferably ananthropologist with agraduate degree andexperience in taking themeasurements. Most of themeasurements are takenwith standardanthropometric calipersand a tape measure, butthere may be a few specialgadgets used, dependingon the exact set ofmeasurements taken.The examination itself

involves a set of surfacemeasurements of the headand face. The number ofmeasurements varies fromcenter to center,depending on thepreferences of the persondoing them, but can rangeupward from as few as 20to 25 to as many as 75 to125. The greater numberprovides more detailedinformation about yourchild’s head and face butalso increases the length ofthe exam. The timeinvolved can be as short as15 to 20 minutes andrequires little more of yourchild than to sit in a chairand be measured. Themeasurements are taken inshort sets, two to three ata time, so there is plenty oftime to fidget in-betweenand for you to askquestions. Children usuallyregard this with interest or

tolerance, though veryyoung children maybecome impatient.

The first set ofmeasurements provides abaseline that is used totrack your child’s growthand development fromthen on. Ideally, it shouldbe performed before anysurgery is done. Themeasurements, and a seriesof proportions that arecalculated from them, onlybegin to have meaningwhen they are comparedto normal standards whichare matched to the sex andage of the patient. Thisgives your surgeon anumerical description ofyour child’s anomalieswhich is more precise thanvisual observations.The timing of the next

measurements will dependon your surgeon’srecommendations fortreatment. If your child isnot having surgeryimmediately, they would bere-examined in a year. Bycomparing the two sets ofmeasurements, we can seehow their head and faceand all its parts aregrowing. This informationcan help your surgeondecide on the timing,nature and extent of thesurgery they recommend.If your child has surgery

very soon after theirexamination, the follow-up

8

anthropology and craniofacial anomaliesBy John C. Kolar, PhD

continued next page �

changes. Their next examwould be about six to eightweeks after surgery. Thisallows time for theirpostoperative swelling togo away and the surgery toheal, but is close enoughto their first examinationthat growth will not affectthe measurements. Thepostoperative exam ismuch shorter and focuseson the area of the surgery.This allows us to seeexactly how the head orface has been changed,which means that whenyour child is seen again ina year, we can see howgrowth is affecting thesurgical results.The anthropometric

examination should berepeated annually untilyour child is fully grown.This isn’t always practical,but it is a goal to aim for.As your child gets older,and growth of the headand face slow down, theymay skip a year or twowithout any affect on theirtreatment plan.

Advantages anddisadvantagesAnthropometry has

several advantages overmore complex techniquesfor collecting informationabout craniofacialanomalies. A skilledanthropologist can gathermuch more informationabout the size and shapeof the head and face withthese measurements thanis possible at present usingcomputer imaging

techniques, whether CT-based or 3-D camerasystems. Because it is non-invasive, it can be repeatedwhenever needed withoutmuch cost and risk.On the other hand, it has

one importantdisadvantage. Becausethese measurements aretaken directly from apatient, they cannot beduplicated because thatpatient grows and themeasurements change.Computer-basedmeasurements can betaken from stored data, sothey can be re-done at alater date as measurementtechniques change andimprove, and are becomingmore and more importantto our understanding ofcraniofacial anomalies. Thefoundation of thesetechniques, though,remains anthropometry.In the long run, all of this

data provides a benefit tomany more people than asingle child. As we gatherthis information fromlarger and larger groups ofpatients, we can separatethe data by diagnosis andcombine the results forindividual syndromes to re-define the characteristics ofeach syndrome. We alsolearn about the growthpatterns in each syndrome,which can help thesurgeons refine theirsurgical techniques. All ofthis will benefit childrenwith craniofacial anomalieswell into the future.

in memory of pauline

this issue of the CCA Network is dedicated to thememory of Pauline Burzio, 13, who went to be with

the Lord on April 8, 2007. Pauline and her family attendedthe Annual Family Retreat and the Burzio family is veryinvolved with CCA. You may remember that Pauline wasfeatured in the winter 2007 ccanetwork. Pauline was a funloving girl and always had a smile on her face. Paulinelived in Berryville, VA, and is survived by her parents Bret &Catherine and three brothers, Ashton, J.B. and August.Pauline will be greatly missed by all of us. We would liketo leave you with the lyrics to one of Pauline’s favoriteworship songs.

My Savior, My Godby Aaron Shrust:

I am not skilled to understand

What God has willed,

what God has planned

I only know at his right hand

Stands one who is my Savior

I take Him at His word and deed

Christ died to save me this I read

And in my heart I find a need

For him to be my Savior

That He would leave

His place on high

And come for sinful man to die

You count it strange, so once did I

Before I knew my Savior

My Savior Loves, my Savior Lives

My Savior’s always there for me

My God He was, my God He is

My God He’s always gonna be

Yes living, dying let me bring

My strength, my solace

from this spring

That He who lives to be my King

Once died to be my Savior

That He would leave

His place on high

And come for sinful man to die

You count it strange, so once did I

Before I knew my

Savior

9

10

calendar of eventsdate event contactJune 28-July 1 17th Annual Cher’s AReeves@CCAkids.com

Retreat 214.570.9099800.535.3643

July 15-20 Camp About Face contact?Bradford Woods Outdoor 317.274.2489Education Recreation and Camping CenterIndianapolis, IN

July 22-24 2007 North American debbie@aboutfaceusa.orgCraniofacial Family Conference 888.486.1209Alexis Park ResortLas Vegas, NV

August 25 Second Annual Wendelyn’s wendelynyvonne@hotmail.com“Course of Dreams” Golf ChallengeCountry Club of ArkansasMaumelle, AR

October 13 Third Annual Friends gdale@stny.rr.comof Jeremy Golf Event www.friendsofjeremy.comWillowcreek Golf ClubBig Flats, NY

planning a vacation?

there’s a new way to support your charity! Book all of

your travel needs at www.ytbtravel.com/ccakids

including flights, cruises, hotels, rental cars, even your

passport. A percentage comes back in funds for CCA.

And, you may rest easily, knowing the site is powered by

reliable Travelocity.

outreach program, increasethe number of syndromebooklets in our series,provide booklets for ourSpanish-speaking familiesand offer more scholarshipsto the annual retreat. Inaddition, we continue ournetworking program, helpour families with financialassistance to travel toquality care and, as youhave determined mostimportant, continue to holdthe annual retreat.As baseball great Yogi

Berra said, “If you don’tknow where you’re going,you’ll end up someplaceelse.” Trust that yourleadership at CCA isdiligent about knowingwhere we are going anddetermined to get there.

Charlene SmithExecutive Director

outside of regular bi-monthly board of directorsmeetings, to look at ourstrategic plan and makesure we are staying ontrack. As we go about ourwork, our focus is on ourfamilies and their needs.When we make decisionsdeveloping our plan, weare mindful of what isimportant to our familiesand what they have told usthey need. We are alsomindful to fulfill ourmission to empower andgive hope to individualswith facial disfigurementand their families.So, in 2007 we will

continue to “get the wordout” so we can reach manymore families. Our mostimportant goal is to doublethe number of familiesCCA serves by 2009. Toaccomplish this goal, wewill enhance our national

chairman, from page 1

ira charitable rolloversdid you know?…

during 2006 and 2007, the newly enacted IRA rolloverprovision permits individuals age 70 1/2 and above to

make charitable donations of up to $100,000 fromIndividual Retirement Accounts (IRAs) and Roth IRAs with-out having to count the distributions as taxable income.The IRA Charitable Rollover is intended to benefit donorsof all incomes as well as nonprofit organizations like CCA.Now is your opportunity to take advantage of this

valuable incentive as only contributions made betweenJanuary 1, 2006 and December 31, 2007 are eligible forthe enhanced tax benefit. Contact your tax advisoror check online at www.treasury.gov.

11

• Planned GivingTax preparation time isalso a good time toconsider long-term taxsavings. When youconsult an attorney orinvestment professionalregarding your wishes fordistribution of your assetsin your will, consider aprovision for CCA. Yourplanned gift in the formof an endowment will liveon after you.

• CCA Web StoreYou can now shop atCCAKids.org for yourT-shirts, mugs, caps andmore. So shop now andshop often!

• Clubs / HobbiesHave your club organize abenefit for CCA. Use yourhobby or something youlove to do to raise funds.

• Denim DaysRaise funds at work forCCA. Establish a specialday or days foremployees to make adesignated donation(cash or check) to CCA inreturn for wearing bluejeans. The donation isusually $1 to $5,depending on how oftenthe event takes place (forexample $1 for a weeklydonation, $5 for amonthly donation). Anyhigher amount would beat the discretion of thedonor.

• Civic OrganizationsPublic awareness leads to

contributions. Contactand solicit opportunitiesto speak to your localcivic organizations suchas Rotary Clubs, KiwanisClubs, even HOGorganizations (CCA hasmany ‘biker’ supporters).Distribute brochuresand/or newsletters orother CCA-sanctionedmaterials for awarenessand information. Ask forcontributions.

• Friends / FamilyLetter Appeal Draftletter to family, friendsand acquaintances—anyone who has met orencountered your child.Contact CCA for asample letter.

• Kitchen Shut DownRaise funds by raffling offchances to win meals forevery day of the week, sothe winner can “shutdown” their kitchen.Local restaurants candonate meals or coupons.This idea could be usedfor a week ofentertainment, such asmovie rentals or theatertickets. Call CCA formore information.

• Collection Cans Asklocal businesses to placea can or box (provided byCCA) to collect donationsor take a can around tocollect donations.

• Get On Board! Read ournewsletter and learn

NEW IDEA!• Southern Living atHome Run a SouthernLiving at Home catalogparty and raise funds forCCA. It's fun and easy todo!! 25% of all of theretail sales will bedonated. Plus you will berewarded with productfor your efforts. ContactRachel Johnson, CCAMom and Director withSouthern Living at Homeemail:southernrachel@sbcglobal.net (please also seewww.laurynhenry.com)phone: 209.664.0500

how to raise funds for cca

cCCA depends on fundsdonated by individuals,

proceeds from family andfriends’ fundraising efforts,corporate giving andfoundation grants. Theneed is great as we growto provide programs andservices to many moreaffected individuals andtheir families. Any help ourreaders contribute is mostappreciated. Here are someways to help.

• www.goodsearch.comEnter Children’sCraniofacial Associationas your beneficiarycharity. (You only have todo this the first time. Youmay add others if youwish.) CCA will receiveup to a penny each timesomeone uses theGoodSearch searchengine.

• Cash for Trash!Save your discarded cellphones and empty laser /ink cartridges and CCAcan turn them in forrebate funds. Call usat 214-570-9099 or800-535-3643 formore information.

• Matching GiftsMany companies offer amatching gift programthat could double or eventriple your gift to CCA!Contact your humanresources office to findout if your company hassuch a program.

about and participate inthe events, raffles andfunding efforts of CCAand our supporters. Passthe donor envelope tosomeone you knowlooking to support acharity. And when youare finished with yourcopy of our newsletter,spread the news! Pass italong or leave it in awaiting room.(Remember to removeyour address label.)

Looking for ideas?Contact Jill Gorecki atJ.Gorecki@ccakids.com

12

vineyard Vines, well-known producer of

100% fine silk ties andother products sportingwhimsical motifs, hascreated a tie especially forCCA donors and friends,using the happy faces onour charity logo.These high-end quality

ties come in a choice oftwo popular backgroundcolors, light blue or royal,and may be purchased for$100 each, gift-boxed anddelivered.

The first 100 CCA logoties were produced toobserve the month ofSeptember, proclaimed byCCA as “NationalCraniofacial AcceptanceMonth” and some are stillavailable.Please, wear one in

support of your charity andto raise awareness thatfosters acceptance ofindividuals with facialdifference. Call our officeor go online to order yourties!

tie one on for cca

ccamugshot

when youpurchase a

CCA Logo Mug, sendus a snapshot of youwith your mug for a“Mugshots” section…each newsletter we’llpost new mugshots!

Alex Smith, 4, poses forthis issue’s “Mug Shot”with his CCA mugpurchased by CCAFriends, Kent &Stephanie Smith ofDallas, TX.

Kent Smith is “dashing” in his royal blue CCA tie!

Peter’s dad, DarinDankelson, sportsthe light blue CCAlogo tie.

We’ve moved!13140 COIT ROAD, SUITE 517

DALLAS, TX 75240

download the newsletter

if you are currently receiving the newsletter by mail, but

would rather download it from CCAKids.org, let us

know by sending your email to AReeves@ccakids.com.

As an added bonus, the online version is in full color!

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 at

800-535-3643. All we ask is that you apply at least

four to six weeks prior to your next appointment.

13

tony’s Wine Warehouseand Restaurant was the

setting where CherConvention volunteer andCCA favorite, Wayne Smithportrayed the diva herself at a

wine tasting dinner and auction and raised more than$3,000 for Children’s Craniofacial Association. Wayneentertained as Cher and as her alter-ego Laverne for morethan 3 hours and even got his friend, Ivana Tramp tomake a guest appearance as Tina Turner. Thanks toWayne, Ivana, and everyone at Tony’s!

Brenda and George Siebert, Melissa and Jon

cCA expresses apologies for this late “kudos” andspecial thanks to Brenda Siebert and her business,

Fine Design. Last fall Brenda had an anniversary saleadvertised to the public donating 10% of everyChristopher Radko ornament sold to CCA. Sales of $1,500garnered a donation of $150. Her effort was part of ourSeptember observance of Craniofacial Acceptance Month.

Buy Gifts from BeautiControl at

www.BeautiPage.com/ccafriends

and CCA gets the agent profit!

Questions? Email Rose Seitz at

rseitz@directed-tech.com

These gifts cause no clutter, because

they get used up!

fundraising news

Wayne Smith as Cher

Wayne Smith entertains asCher’s “Laverne” character

Ivana Tramp portraysTina Turner to helpraise funds for CCA

14

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.org

website

• Annual Cher’s Family

Retreats

• Public awareness

• Family networking

• Advocacy

ccaprograms

recruit volunteers who willdistribute educationalmaterials throughout theircommunities.

If you would like to helpeducate your communityand take part in thisnational awareness effort,

call or email CCA ProgramDirector, Annie Reeves at800-535-3643 orAReeves@CCAKids.com.

regional volunteers

public awareness aboutcraniofacial conditionsis important on several

levels.It’s important that families

find quality medical care,that healthcareprofessionals are aware ofthe special medical andemotional needs of childrenand adults with facialdifferences, that the publicunderstands and acceptsfacial differences and thatindividuals with facialdifference are accepted.CCA has formed a

network of regionalvolunteers across thecountry who have bandedtogether in an effort toeducate and inform thepublic. The regionalvolunteers and CCA willnow turn to local areas to

CCA Regional Map

WEST: Pacific Mountain MIDWEST: West North Central East North Central NORTHEAST: Middle Atlantic New England

SOUTH: West South Central East South Central South Atlantic

WAWA

OROR

CACA

NVNV

IDID

MTMT

WYWY

COCO

NDND

SDSD

NENE

KSKS

OKOK

MNMN

WIWI

MIMI

MIMI

ILIL OHOHININ

KYKY

TNTN

MSMS ALALGAGA

FLFL

SCSC

NCNC

VAVA

WVWV

PAPA

MDMD NJNJ

DEDE

NYNY

VTVT

NHNH

MEME

MAMACTCT

RIRIIAIA

MOMO

ARAR

LALA

UTUT

AKAK

HIHI

NMNMAZAZ

TXTX

WA

OR

CA

NV

ID

MT

WY

CO

ND

SD

NE

KS

OK

MN

WI

MI

MI

IL OHIN

KY

TN

MS ALGA

FL

SC

NC

VA

WV

PA

MD NJ

DE

NY

VT

NH

ME

MACT

RIIA

MO

AR

LA

UT

AK

HI

NMAZ

TX

15

donors, january 1 – march 31, 2007*

*Listed are Monetary Donations of $25 or more through 1st quarter, 2007. 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.

Gifts fromIndividuals

CCA Supporters(up to $100)

AnonymousDianelis AdamsSharon AllbrightEstate of Charles & Wilmetta AllenGlenn A BerardMildred Bonneau 30Mike BoskoTrevor BryanLeonard & Wilma ConvissorFrances FisherJohn & Carrie FollettSidney GoldmanReynold GravinaAndrea S. HerbertRobert S. JohnsonMarilyn KnueveAnnette KolodnyJim LucasWilliam & Juanita LuybenJames MacCaulayJames J. & MaryJo MontalbanoMina MulveyStan W. NelsonHugh Ann Payne & R. Tucker AtteberyMarie QuarantaRonald & Dianne RemillardChris RienerHarry E. SmithMilton Orin SmithHerbert StentzelTed Verdone, Jr.Stephen WrightDonald & Anna ZaengleJohn Zaengle

CCA Friends($100 +)

AnonymousDouglas BolducAnn & William “Doug” BurginLee & Linda ConwayDiana CritchlawJerry Lynn & Dianne ErwinMaria & Mike EstradaFred & Judi FreemanMary GarberCharles Michael GerberJill GoreckiMartin P. KoopRoger & Carolyn LambDonald G. & Ann LucasChip MichaelsonGreg ParkinsonDavid ReisbergKevin Charles RileyPolly & Jeff RosignolGlenn Eugene ThomasCourtney VincentGregory WesleyKenneth Wilson

CCA Extended Family($500 +)

CCA Sponsor($1,000 +)

Estate of L. Katsafouros

CCA Benefactor($5,000 +)

Estate of Jacqueline M. Conybear

Memorials /In-Honor GiftsSharon Allbright, in memory of Robbie

DickAnonymous, in honor of Freddie Seitz,

“A courageous and brave kid!”Lee & Linda Conway, in honor of

Quentin ZaengleMaria & Mike Estrada, in honor of,

Antonio Estrada from Grandpa &Granny Estrada

Sidney Goldman, in honor of grandson,Evan Goldman

Jill Gorecki, in honor of Char SmithAndrea Herbert, in honor of Caroline

DaleMandy Hiznay, in honor of Freddie SeitzThe Industrial Company, in honor of

Ryan MacLennanMartin P. Koop, in honor of Brendan

WalshDonald G. & Ann Lucas, in honor of

Brody LucasWilliam & Juanita Luyben, in honor of

Cole MacasiebHarry “Sonny” Smith, in the name of

Wayne SmithTed Verdone, Jr., in honor of Lara

VerdoneVivo Brothers, Inc., in honor of Sadie

VivoLucille S. Weaver, in memory of Marie

AckermanDiana Weber, in honor of Thomas B.

WeberGregory Wesley, in honor of Chase

IngramWillamette Christian Center, in honor of

Brenna Johnston

Corporate /Foundation Gifts

CCA Corporate / FoundationFriends(up to $1,000)

America’s Charities (Employee GivingFunds Management)

American Express Company (EmployeeGift Matching Program)

American Express Company (EmployeeGiving Campaign)

AT&T (Employee Giving Program)Birds Rotisserie Chicken CaféCher ConventionCFC Principal Combined Fund

Organization, San Antonio, TXUnited Way, New Orleans CFC contribu-

tionsUnited Way of Buffalo & Erie County,

CFC Niagara Frontier, NYUnited Way of Fresno CountyCFC Huntington, Greater Cleveland, OHCFC of South Puget Sound,Tacoma, WAFunding FactoryHouston Katz’sThe Industrial Company, by Marsha

ChiversNetwork for Good (donors listed sepa-

rately)Penn, Schoen & Berland Assoc., Inc.The Prudential Foundation

(Employee/Matching Gifts)The Prudential Foundation, Matched Gift

of Diana CritchlawSafeway, Inc. (purchases percentage

incentives)Sarah Hall ProductionsSchoolpop, Inc. (purchases percentage

incentives)United Way of Tarrant County (directed

donations)United Way of Tucson and Southern

ArizonaWellpoint Funds ManagementWells Fargo Community Support

Campaign (Employee Giving)YTB Travel Network, Inc. (purchases per-

centage incentives)

CCA Corporate / FoundationSponsors($1,000-$5,000)

A grant from The MinneapolisFoundation, recommended by Travis &Christa Rymal and Family

Vivo Brothers, Inc.

CCA Corporate / FoundationPartners($5,000 or more)

A grant from Fed Ex

Fundraising Events

Up to $1,000

BeautiControl / Rose Seitz, CCAVolunteer

Fine Design Christopher Radko orna-ment sale / Brenda Siebert, CCAVolunteer

Katz’s Deli Fundraising Table / JenniferGuerra, CCA Volunteer

Sarah Orne Jewett / Mary Zimmer, CCAVolunteer

Smiley Face email campaign / PeggyMcDannel, CCA Volunteer

Valley View School Staff “Dress DownDay” for CCA in honor of Ava Beeler

Willamette Christian Center / Brenna’sRaffle Fundraiser / Robyn Johnston,CCA Volunteer

$1,000-$5,000

Tony’s Wine Warehouse “Cher the Love”Event / Wayne Smith, CCA Volunteer

$5,000 or more

CCA Jamaica Rafle

Honorary Chairperson:Cher

Board of Directors:Rose Seitz, CHAIR, Youngstown, OHKurt Allen, JD, CPA, CFP, WMA,

Canfield, OHGeorge Dale, Corning, NYTony Davis, DMD, Tuscaloosa, ALDonna Gossett, Cullman, ALDan Paulson, Fargo, NDRobert Vargas, Abilene, 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:TBD

Accountant:Don Smith

The views and opinions expressedin this newsletter are not necessarilythose of CCA.

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

NONPROFIT ORGU.S. POSTAGE

PAIDDALLAS, TX

PERMIT NO. 555

children’s craniofacial association13140 Coit Road, Suite 517 • 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 ustheir name and address.

natalie Criswell has become a veryactive volunteer for CCA after

attending her first retreat in Hershey, PA.She and her son, three-year-old Guerin,who was born with frontal nasaldysplasia, helped our regular newslettervolunteers label the February newsletter.

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

Natalie is also a local volunteer in CCA’snational awareness effort. In that capacity,she distributes packets to local Dallas-areahospitals. Natalie and Guerin are becomingregulars at the CCA office, helping out witha variety of tasks. Many thanks to Natalie forall of her volunteer efforts!