messagefrom theprogramdirector

is it just me, or is thesmell of chocolate still in

the air? Have you ever seenas much chocolate in oneplace in your life as you didat this year’s CCA FamilyRetreat in Hershey, PA?

This year was the largestretreat, and might havebeen the most rewardingfor the CCA staff—wehope it was just asrewarding for all whoattended.

With a huge crowd alsocomes a huge amount ofpreparation. CCA is sofortunate to have manyfamilies and friends willingto jump right in and do any

ccanetwork

empowering and giving hope to facially disfigured individuals and their families

newsletter of the children’s craniofacial association Cher — honorary chairperson summer 2006

insidecca kidlester labrake . . . . . . . . . 2cca teenkayla smith . . . . . . . . . . 3cca supersibchad tucker . . . . . . . . . . 4cher convention 2006 . . 52006 retreat. . . . . . . 6-8tie one on for cca . . . . . 8family news! . . . . . . . . . 8pete’s scramble . . . . . . . 9family fundraising . . . 10nacf conference . . . . . 11regional volunteers. . . 11donors . . . . . . . 12-13“monster” assist!. . . . 13fundraising news . . . . . . . . . . . . . 14calendar of events . . . 14cca programs . . . . . . . 153 cheers . . . . . . . . . . . 16

see program director,page 15

across the nation, CCA families, friends, volunteers

and related support groups are widening the circle of

acceptance of individuals with facial differences. The goal

of this grassroots effort is to educate the public to realize

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 the programs and services

available to children and adults with facial differences and

their families. When you receive your widening the circle

of acceptance envelope, we hope you will join this

important effort.

national craniofacialacceptance monthBeyond the Face is a Heart

lester LaBrake is twoyears old and lives in Lee

Center, NY. He lives with hismom, 14-year-old brotherJason and 12-year-old sisterCiara.

Lester attends a UnitedCerebral Palsy Center twicea week for speech therapyand developmental playgroup. He is doing a greatjob in speech therapy andhas made lots of progress.The play group helps Lesterinteract with children hisage. At the group theycolor, work on craftprojects, participate in gymactivities and go for walks.

Lester loves to playoutside, no matter theweather—he loves playingin his pool during thesummer and sleddingduring the winter. When

indoors, he likes to be readto, and will walk up to afamily member and say,“Read me.”

Lester was born with acleft lip and palate. He hashad four surgeries and willneed many more in thefuture. Surgeries have beenscary for the family, butthey are constantly amazedat what doctors can do forchildren like Lester.

They are also glad to havebeen introduced to CCA.With CCA’s help, theLaBrake family was able toattend their first familyretreat in Hershey, PA.Lester made a very goodfriend, Nick, and his parentsmet some wonderfulfamilies as well. They lookforward to keeping in touchwith them throughout theyear.

meet lester labrake

Lester and his mom, Darnell, have fun at the dinner-dance at thissummer’s retreat in Hershey, PA.

2ccakid

hello! My name is

Kayla Smith, but all

my friends call me K.J. I

was born on April 12,

1991, in Maryland General

Hospital in Baltimore. A

few days later I was

diagnosed with Apert

Syndrome at Walter Reed

Army Medical Center.

I hear my mom telling

people about when and

how I was born, and, of

course, I don’t remember

any of it. I do know that I

have had 27 surgeries; a

number of them have

been at the Children’s

Hospital in Pittsburgh, PA.

The medical stuff is for

my mom to share. I want

to share the fun stuff

about my life.

First, I have a passion for

music. My favorite kind of

music is Christian music.

I’ve sung a few times in

front of large audiences,

including my school,

church and church camp.

My favorite songs are

“Every Move I Make,”

“There’s No One Like You,”

“Sing Like the Saved,”

“Nothing But the Blood”

and “The Grand Ole Flag”.

Next, I love to play

sports. I have earned many

ribbons while participatingd

meet kayla smith

in the Special Olympics. My

two favorite sports are

basketball and swimming. I

also like to participate in

other sports like track and

field, softball, mat ball, kick

ball, dodge ball and

bowling. I also like to

watch football with my

mom. My favorite football

player is Ben Roethlisberger.

Finally, I enjoy spending

time with my friends and

family. In the summer, one

of my favorite family

activities is going to

amusement parks. I really

had a lot of fun at Hershey

Park this year with all my

new friends I met at the

CCA Family Retreat. I also

like to go camping and

biking during the summer

with my family.

During the winter, I like to

play board games and

watch movies with my

grandparents. My favorite

board games are “Outburst”

and “Scattegories.” And my

favorite movies are Cheaper

by the Dozen and Daddy

Day Care.

Well, it’s time for me to

go have some fun. I’m

trying to decide if I want to

go visit my grandma, go

swimming or listen to my

music.

3

ccateen

4

teach the tricks class andthe Little Dragons classes. Iam the second youngestblack belt at twelve yearsold in the Jhoon Rheeschool of Tae Kwon Do.

Blake and I are very close.I know everything abouthim, and I can always tellwhat he is thinking. Hehelps me, and I help him. Asa family, the three of us—Mom, Blake and myself—get along great and domany things together. My

mom always makes surethat I get to follow all of myinterests, and the same goesfor Blake.

I have been involved intheater and writing forsometime now and aspireto be an author. I havebeen in several plays, andmy favorites so far are TheMusic Man, where I playedWinthrop and Merrily WeRoll Along, where I playedFrankie Jr. I just finishedSearching for Gold in a SaltMine, a play that I wroteand also where I played therole of Jack Dimwitty. Itwas put on as the end-of-the-year performance atmy school.

I am also writing a horrornovel with by best friendentitled Corner of the Eye.That is all I will tell youabout the book. When it ispublished, you will have toread it.

I also enjoy music andgoing to concerts with myfamily. My favorites fornow are Bon Jovi, whoputs on a fantastic show,and Nickelback. Blake and Ido not always agree onmusic, but we compromiseand I go to some of hisconcerts and he goes tosome of the ones I like. Mymom loves it all.

I am also an avid wrestlingfan and very much into the

WWE. I watch it as often asI can, and someday I wantto go see them in person.WWE is just like many otherinterests I have—once I likesomething, I want to knoweverything about it, so Iresearch and keep files on it.

Right now, I amresearching werewolvesand have more than 300pages collected; I plan onwriting a reference guideon them. It will includemyths, stories, historicevents and characteristics.Most important, it will askthe question aboutwhether or not werewolvesreally exist. If you ask me,the answer is yes. I willkeep my reasons to myselffor now.

I am also an avid quadrider, Internet gamer andweight trainer. I hang outwith my friends and,according to my mom,spend way too much timeon the phone. (Hey, that’swhat almost all teenagersdo.) I am also an animallover; I have six cats andthree dogs and if I couldhave more, I would.

Most of all, I am gladthat I am Blake’s brotherand my mom’s son. Myfamily rocks!

hi. My name is ChadTucker. I am the

younger brother of BlakeTucker. Most of you knowBlake through CCA, and heis well known in our areafor his great attitude andhis ability to do anything hesets his mind to.

As a matter of fact, he isthe first blind black belt inJhoon Rhee Tae Kwon Do.Actually, all three membersof my family tested andpassed our black belt teststhis year. My brother and Iare also on the competitionteam together, and I havewon two nationalchampionships and severallocal championships. I help ccasupersib

meet chad tuckerBlake Tucker’s Younger Brother

the 4th Biennial CherConvention, held at the

Warner Center Marriott inWoodland Hills, CA, on July7-9 raised $20,000 for CCAand gave Cher fans aweekend full of Cher fun.Convention organizers JudyDidelot and Kim Werdmanonce again thought of everydetail to make the

convention a Cherificexperience for all fans.

Highlights of theconvention included aFriday night dinner with a30th AnniversaryCelebration of the CherShow, starring Cherimpersonators CatherineMarie Carter, ChadMichaels, Wayne Smith,Amy Hohimer, MarkParry and GilbertGauthier as Cher, LilyTomlin, Dolly Parton, SonnyBono, Gregg Allman andFrank Sinatra. A silentauction including an array

of Cher memorabilia wasconducted before andduring dinner andconcluded after theshow.

Saturday waspacked with

fun, from the time the fansentered the convention hallin the morning until theystumbled tiredly back totheir rooms in the weehours. Among manyactivities, Cher fans pittedtheir knowledge of Cher’scareer against the Cherimpersonators in a game ofFamily Feud. And thewinner was…Cher fans ofcourse!

Conventioneerswelcomed Tim Bagleyfrom the “Will and Grace”show, who joined thecrowd and participated inthe Cher poetry readings.Tim and his crew joined thefun and filmed for possibleinclusion in an upcomingTV show staring MeganMulally.

On Saturday evening,Cher fans were entertainedby another dinner showand participated in a liveauction of some interesting,unique and very collectibleCher-related memorabilia.

Many of the conventionattendees have reallybecome a part of the CCAfamily and enjoy biddingon auction items to raisemore funds for the charity.In fact, this year a coupleof auction participantsraised their own bids toensure CCA received ahigher donation. The bestauction strategy? No, but

CCA thanks you for yourgenerosity.

CCA is grateful to all thevolunteers that donatedcountless hours over thepast two years gettingready for the convention.Among many are:• Judy Didelot – Originator,

Coordinator• Kim Werdman –

Originator, Coordinator• Mike Werdman –

Production• Linda Alamprese –

Public Relations• Mary Ladd – Registration,

Bus Tour• Brad Wright – Volunteers• Linda Vala – Donated

memorabilia for auctions• Fred, Edna, Robyn and

Marina Fisher, whostored merchandise,framed posters, etc.A special thanks goes to

Cher for supporting theconvention by donatingnumerous memorabilia forthe auctions and all theimpersonators for donatingtheir time and expenses.

cher convention 2006raises $20,000 for cca

5

6

this year’s retreat thebiggest ever for cca

cCA’s 16th AnnualCher’s Family Retreat

broke attendance recordswith a turnout of 104families. There werefamilies coming from 33 ofthe 50 states, one familyfrom Canada and a familyall the way from Australia!Of the 104 families, 35were first-time attendees.

The retreat started onThursday afternoon withregistration and thencontinued on to the icecream social. A yummy icecream bar, filled with allsorts of wonderfultoppings was on the menu.During the ice creamsocial, the staff presentedawards to families whohelped raise money forCCA during the past year,as well as a special groupof volunteers.

On Friday, the familiesenjoyed a full day of

swimming. Except for ashort sprinkle in theafternoon, the weatherwas perfect. The groupenjoyed a picnic lunch andafterwards, lots of greatR&R out by the pool.

Friday evening was afamily night, whichincluded a Chinese raffle,movies, and games.Families had a chance tojust sit and visit while thekids had a great timegetting to know eachother. While family nightwas going on at the hotel,teen night was going on atHershey Park. This gave ourteenage attendees achance to get away as agroup. Flanked by adultvolunteers, the teens wereable to preview the parkand get a jump on all therides.

Saturday morning thegroup headed over toHershey Park, for a day full

of fun. Thepark hadrides for allages, andeveryonereally enjoyedthemselves. Many of ourfamilies were truly braveand rode the scariest rollercoaster there – StormRunner. It literally shootsyou from 0-72mph in twoseconds. Wow!

Saturday evening is theevent to which the retreatfamilies most look forward,the famous dinner/dance.After everyone fortifiedthemselves with awonderful buffet dinner,they put on their bestsinging voices for karaoke.And then, moms, dads and kids of all ages dancedthe night away. ScottGuzzo led the group in the train dance, and JaciSamhammer performed acounty western dance.

Andrew Perry sang“Believe” and BiancaMoon, from Australia,wowed the audience witha song she wrote called“Truly Beautiful.”

Sunday morningeveryone gathered forbreakfast and goodbyes.There were lots of hugs,tears, smiles and promisesto stay in touch. Theretreat is so special to allthe families that attend aswell as the CCA staff. Ourfamilies have told us it’s themost important service weprovide, and we agree! Wehad a wonderful timemeeting all of you andhope to see you next yearin Salt Lake City!

continued next page ð

7

retreat, continued from page 7

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

The first 100 CCA logoties are being produced toobserve the month ofSeptember, proclaimed byCCA as “NationalCraniofacial AcceptanceMonth.”

Please, wear one insupport of your charity andto raise awareness thatfosters acceptance ofindividuals with facialdifference. Call our officeto order your ties!

www.vineyardvines.com

tie’d to the cause

great news! fromour familiesAaron Guzzo In June of this year, seniorAaron Guzzo was chosen tocompete in the National SpeechTournament in Dallas, Texas.“This is the ultimate speechevent. This is it,” said Aaron.“I plan on having fun.” Aaronworked his way through localand regional tournaments togain a ticket to Dallas. Bymaking it to nationals, Aaron is in the top 200 in the nationin his category. Congratulations,Aaron!

8

auction and raffles. Thanksalso to fellow CCA friends,Sandi and Eva Daniels,who helped at this year’souting by selling raffletickets and working the“Vegas” competition onthe 7th hole. Five-year-oldEva, also with Goldenhar,made a great secondambassador for the event.

The Pete’s Scrambleevent is primarily focusedon spreading localawareness and acceptanceof craniofacial differences.Eva and Peter along withphotographs from the2005 retreat in Nashvillestole the hearts of manyplayers, several of whomplan to support the eventagain next year as well asspread the word to friends.

Mark your calendars fornext year’s outingscheduled for May 19,2007, once again atBeacon Hill in CommerceTownship. All levels of golfskills as well as support arewelcome!

fourth annual pete’s scramble

the Dankelson familyrecently hosted the

Fourth Annual Pete’sScramble for CCA atBeacon Hill Golf Course inCommerce Township(Detroit), Michigan. Heldon May 20, the outing wasanother big success, raisinga record $11,000 in directdonations to CCA! Afterover a week of solid rain,almost 70 players enjoyeda beautiful day of golf andfun, ending at the “19thHole” for raffles, prizesand a silent auction.Everyone who golfedreceived a Pete’s Scramblefor CCA T-shirt and a CCAgolf towel to help spreadawareness and acceptancefor people with facialdifferences.

The Dankelsons wish tosend their thanks andgratitude to all of Pete’sgenerous individual andcorporate supporters aswell as several PGA andNASCAR professionals whograciously donatedmemorabilia for the silent

9

1010

e ach year, Andrew Hartley’s elementary school,Eagleville Elementary, holds an event to raise

money for charity. This year, the school’s fundraisingcommittee asked the Hartley Family to choose thebeneficiary. Andrew’s mom Karen, selected CCA fromamong the causes their family supports.

At the 2006 Annual Family Retreat in Hershey, PA, Karendelivered more than $5,500 to Development Director JillGorecki! Our sincere thanks to Andrew Hartley and hisfamily and to all involved in the Eagleville ElementaryWalk-A-Thon.

t he family of CCA Kid Elizabeth Ivy Dalton aregrieving the death of her Uncle Kevin, but they have

transformed sadness into hope. CCA has receivednumerous contributions made in memory of KevinDalton. On behalf of all CCA families and friends, wewish to express our profound gratitude to the Daltonfamily for this kind gesture, and we extend our deepestsympathy for their loss.

thank you, cca families and friends,for your fundraising efforts

olivia Dean and her mom, Karla Dean, held their firstBingo Social, which raised $1,456 to benefit CCA!

Olivia and her friends had lots of fun holding the eventand hope to have another during the coming school year!We truly appreciate their efforts!

Olivia and Karla received recognition at the 2006 AnnualFamily Retreat, along with others who helped raise funds,and awareness, over the previous year.

carolyn Hall and her co-workers at the AmericanMedical Association in Chicago, IL held a Denim Days

fundraiser to benefit CCA. For more than a year, Carolynpursued making CCA a beneficiary for the fundraisingevent. It was worth the wait—we happily, and gratefully,accepted a check for $1,107.46!

Carolyn Hall (seated, smiling) and Maria Kowalski encouragecolleagues to “dress down” for CCA.

Rich, Karen, Andrew and Alex Hartley of Collegeville, PA.

t he North AmericanCraniofacial Family

Conference, which washeld July 23-25 in Las Vegas,Nevada, was packed withthree days of education,sharing resources and fun.CCA was proud to be theLeadership Sponsor of thisimportant event conductedby Cleft Advocate andAboutFace USA. Childrenwith craniofacial conditionsand their moms, dads andsiblings attended workshopsespecially designed for theirneeds and interests.

Workshops for parents,teens, kids and affectedadults were designed toinform, educate andentertain. Some of themany topics covered wereapplying for and landing ajob, ADA laws, employeebenefits, navigating theinsurance maze, earlychildhood rights, dealingwith bullying and taking

the fear out ofhospitalization.

Back by popular demandwas the keynote speaker,humorist, David Roche.David brings an under-standing of living with acraniofacial disfigurementand adds his brand ofhumor into a compellingmessage filled withcourage, inspiration andlaughter. In two workshops,David also coachedattendees in telling theirstories. David believes thateveryone has a message,based on their personalexperiences, to bring to the world. He also believesthat their stories willchange lives.

Anotherpresenter backfor the secondyear was theever-so-popularBarbaraKrammererQuale. Barbara

11

public awareness about

craniofacial conditions

is important on several

levels.

It’s important that

families find quality medical

care, that healthcare

professionals are aware of

the special medical and

emotional needs of children

and adults with facial

differences, that the public

understands and accepts

facial differences and that

individuals with facial

difference are accepted.

CCA has formed a

network of regional

volunteers across the

country who have banded

together in an effort to

educate and inform the

public. The regional

volunteers and CCA will

now turn to local areas to

recruit volunteers who will

distribute educational

materials throughout their

communities.

If you would like to help

educate your community

and take part in this

national awareness effort,

call or email CCA Program

Director, Annie Reeves at

800-535-3643 or

AReeves@CCAKids.com.

regionalvolunteers

is a consultant andspeaker/trainer regardingimage enhancement. Sheoffers behavior skillsprograms to enable peoplewith facial and bodydifferences to bettermanage questions, staresand teasing as well as tocreate a positive outerimage.

Dr. Thomas C. Hart, theclinical director of theDivision of IntramuralResearch at the NationalInstitute of Dental andCraniofacial Research,spoke on the expressionand function of defectivegenes that are associatedwith oral health.

The Monday eveningdinner/dance found kids ofall ages twisting, boogieingand doing the chickendance! Many friendshipswere made and a greattime was had by all!

CCA wishes tocongratulate Debbie Oliver,the new executive directorof AboutFace, and pastexecutive director, RickieGill, for another job welldone.

Rickie Gill, retired ED, About Face; Debbie Oliver, ED, About Face;Annie Reeves, Program Director, CCA; Char Smith, ED, CCA; DavidReisberg, DDS, President, About Face

north american craniofacialfamily conference

12

Gifts fromIndividuals

CCA Supporters (up to $100)

Sharon AllbrightAnonymous Brian & Karla BausMary & Robert BeckDavid Bernstein & Andrea ZintzRon Birks & Kathi DouglasWilliam & Arlene BlumenthalMildred BonneauJimmy & Beverly ButeraJames & Brenda Burnett, Jr.Ann ByrdPatricia CarrascoBarbara ChernetzHarold & Gail CohenDiana CritchlawJ.L. DaltonSarah DelventoJ. DicksonJerry & Dianne Erwin for stu-

dents at BebenseeElementary

Robert Jr. & Janice FallonT.M. FarrellStephen & Marion FrostJennifer G Arthur GoldbergSidney GoldmanEd & Donna GranadosLecerrell GreeneJeffrey GreesonMaurice GutzlerJohn J. & Arleen HeirtyKelly HernandezBarbara HopwoodRichard & Judy HornMelissa & Donald HouseRichard HoweDorothy & Matthew HunyadiA.E. KarpinBrian KatzKathryn KempLee & Jenny KnutsonThomas & Barbara

KochendorferMichael & Mary LambertGregory LaneyDiane & Bruce LarueKaren & Charles LeeDiana LeskoDoris & Norbert LustineJames MacaulayIrene MacedoJennifer MaddenJoseph MalangoneMark & Anita MatthewsEllen McPaddenAnn E. MelendyJoseph & Alison MorriseyJanell NelsonEldora & Howard Niedermiller

donors, january 1 – june 30, 2006*

Geraldine O’ReillyChristina O’SullivanMary & Anthony PallanteCaroline PeterssenHarry H. Porter, Jr.Candace PowellJoyce M. PratherDeborah RaderJ. & B.L. RieseJim & Diane RumboCarol SchattRose SeitzTom & Jean SilvaRand SinanianMarjorie SmithTemmie SmithNancy StephensKaren StottRichard SzulczewskiIrina TemkinAnthony & Rae TetaMr. & Mrs. Howard M. ThomasLiz TracyStephanie UribeKenny & Eugenia VerbeckmoesElizabeth Vitez-BainbridgeAlicia A WadasLee & Bernice WallaceRita WattonDebra WedlockLeslie Weisman Robert & Anjolene WhaleyJohn & Remy WilcoxJoanie WiinbladMichael Wood

CCA Friends ($100 +)

David & Judith AlbersChristine BarrettWilliam & Madaline BarryKevin & Ellen HaughJoyce Borsellino & Bill MasloskiAnn ConnollyMark & Lania DeerJerry Lynn & Dianne ErwinStephanie FloydJohn & Carrie FollettRobert HaleyDenyse HalperinDavid & Ginger HenshallKathy & Stephen HubbardDaniel & JoAnn KopshinskyRoger & Carolyn LambS.F. LuhrsJanis & Doug Macut Richard & Beth MarsdenJoe NeuhofFred PaulMary, Conrad, Rebekah PerkinsKaren & Mark ProctorJeff & Polly RosignolPaul SchmidtMartin & Patricia SchweinhartRubin Solis for Tower Softball

Team, Austin, TX

Dwight VaughnDavid & Adrienne WeilJohn & April WhartonMyrna & Ronald Zaccagnino

CCA Extended Family ($500 +)

George & Kristine DaleConrad DePintoCraig Dufresne, MDAlbert & Bunsiri Frazier Fred & Judi FreemanMr. & Mrs. Thomas T. Soviero Courtney Vincent

CCA Sponsor($1,000 +)

Jane L. GoodmanDan & Denise Paulson

CCA Benefactor($5,000 +)

Greg Luetkemeyer

Memorials / In-Honor Gifts

David & Judith Albers, in mem-ory of Kevin Dalton

William & Madaline Barry, inmemory of Kevin Dalton

Ron Birks & Kathi Douglas, inhonor of the marriage ofMarybeth Ayres & Jim King

Joyce Borsellino & Bill Masloski,in memory of Kevin Dalton

Boston JetSearch, Inc, in memo-ry of Kevin Dalton

Jimmy & Beverly Butera, inmemory of Bernice Peace

Jimmy & Beverly Butera, inhonor of Janet Carter’s birth-day

Cher.com participants, in honorof Cher’s birthday

Cher fans, in honor of Cher’sbirthday

Sarah Delvento, in memory ofKevin Dalton

Conrad DePinto, in memory ofKevin Dalton

Cosgrove Aircraft Service, Inc.,in memory of Kevin Dalton

Duncan Aviation, in memory ofKevin Dalton

Mr. & Mrs. Robert Fallon, Jr., inhonor of the marriage ofMarybeth Ayres & Jim King

T.M. Farrell, in honor of themarriage of Marybeth Ayres& Jim King

First Grade Team at BebenseeElementary, Arlington, TX,

in honor of music teachers, MsScott & Mrs. Atchley

Stephen & Marion Frost, inmemory of Kevin Dalton

Arthur Goldberg, in honor ofthe marriage of MarybethAyres & Jim King

John J. & Arleen Heirty, inmemory of Gene Zuk fromJim & Arleen

John J. & Arleen Heirty, inmemory of Bill Genthner

John J. & Arleen Heirty, inmemory of Tammi Kleis fromJim & Arleen

David & Ginger Henshall, inhonor of Jeremy Dale

Richard & Judy Horn, in honorof the marriage of MarybethAyres & Jim King

Kelly Hernandez, in honor ofCher’s birthday

Kathy & Steven Hubbard, inhonor of Elizabeth Hubbardfrom Mom & Dad

Dorothy & Matthew Hunyadi, inmemory of Kevin Dalton

Kathryn Kemp, in memory ofPatrick Kemp

Lee & Jenny Knutson, in honorof daughter, Nalani from theKnutson Family

Daniel & JoAnn Kopshinsky, inhonor of Robbie Gorecki

Bruce & Diane LaRue, in honorof Scott Guzzo from theLaRue Family

Karen & Charles Lee, in honorof the marriage of MarybethAyres & Jim King

Greg Luetkemeyer, in honor ofmother, Betty Luetkemeyer

Doris & Norbert Lustine, inmemory of Ruth Cohen

Janis & Doug Macut, in honorof Dr. Savi

Janis & Doug Macut, in honorof Dotti Macut

Joseph Malangone, in memoryof Kevin Dalton

Ellen McPadden, in honor ofJeremy Dale from Aunt Ellen

Ann E. Melendy, in honor ofDianna H. Allen

MaryAnn Pallante, in honor ofFreddy Seitz

Fred Paul, in memory of KevinDalton

Mary Perkins, acknowledged toMichael Perkins

Harry H. Porter, Jr., in honor ofthe marriage of MarybethAyres & Jim King

Joyce M. Prather, in honor ofFrankie Prather from Mom

Karen & Mark Proctor, in honorof the marriage of Marybeth& Jim King

Rib-X Pharmaceuticals, Inc., inmemory of Kevin Dalton

Jim & Diane Rumbo, in honorof the marriage of MarybethAyres & Jim King

Carol Schatt, in honor of themarriage of Marybeth Ayres& Jim King

Tom & Jean Silva, in memory ofKevin Dalton

Rand Sinanian, in memory ofKevin Dalton

Tower Softball Team, Austin,TX, in memory of KevinDalton by John’s Teammates

Szaferman, Lakind, Blumstein,Blader & Lehmann, in honorof Avery Lytle

Tag Aviation (USA) Inc., inmemory of Kevin Dalton

Elizabeth Vitez-Bainbridge inhonor of son, Thomas Vitezfrom Elizabeth J. Vitez

Alicia A Wadas, in honor of themarriage of Marybeth Ayres& Jim King

David & Adrienne Weil, inmemory of Kevin Dalton

Westchester AircraftMaintenance Assn., in mem-ory of Kevin Dalton

John & April Wharton, in honorof Jake Wharton

Michael Wood, in memory ofKevin Dalton

Corporate /Foundation Gifts

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

AMT Internet CompaniesAT&T (Employee Giving)Alessi, S.C.America’s Charities (Employee

Giving Funds Management)American Express (Employee

Giving)Bank of America United Way

Campaign (DirectedDonations)

Boston JetSearch Inc.Cosgrove Aircraft Service, Inc.Dell USA (Employee Giving)Dream Kitchens, Inc. by Keven

& Terri SchmidtDuncan AviationFidelity Charitable Gift Fund

(Matched Gifts)

Funding Factory (RebatesProgram)

Lockheed Martin (EmployeeGiving)

Prudential Foundation(Employee Giving/MatchingGifts)

Rainer & Anding & McLindonby George Anding, Jr.

Rib-X Pharmaceuticals, Inc.SBC (Employee Giving)Safeway, Inc. (Purchases

Percentage Incentives)Sarah Hall ProductionsSchoolpop (Purchases

Percentage Incentives)Square D Foundation (John

Eschmann, Matching Gift)Superior BondingSzaferman, Lakind, Blumstein,

Blader & LehmannTag Aviation (USA) Inc.Tweezerman CorpUnited Way of Central

Maryland (DirectedDonations/Employee Giving)

United Way of Fresno County(DirectedDonations/Employee Giving)

United Way of Long Island(Directed Donations)

United Way of MetropolitanDallas, Inc.(DirectedDonations)

United Way of MetropolitanTarrant County (HumanityFund/Employee Giving)

United Way of Tucson &Southern AZ (DirectedDonations)

Wellpoint Foundation(Employee Giving/MatchingFunds Management)

Wells Fargo (Employee Giving)Westchester Aircraft

Maintenance Assn.

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

A grant from the Dallas JewishCommunity Foundation, rec-ommended by Mr.&Mrs.Gerald Frankel

A grant from 84 LumberCompany, Margaret HardyTrust

Guyuron Family Foundation,Inc.

A grant from the David &Shirley Hubers Family Fund ofThe Minneapolis Foundation,recommended by Travis &Christa Rymal

A grant from the StaubachFamily Foundation

Wal-Mart

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

The Cher CharitableFoundation, Inc.

A grant from the Jorge PosadaFoundation

FundraisingEvents

Up to $1,000

Cher’s Birthday / Cher.com FansHighland Elementary School

Denim Days Fundraiser / inhonor of Justin Prince

$1,000-$5,000

American Medical AssociationDenim Days Fundraiser /Carolyn Hall, Organizer/CCAVolunteer

Dean Bingo Social Fundraiser /Karla & Olivia Dean, CCAVolunteers

$5,000 or more

Fourth Biennial CherConvention / CherConvention CCA Volunteers

Eagleville Elementary Walk-A-Thon / Family of AndrewHartley

Fourth Annual Pete’s Scramblefor CCA / Darin & DedeDankelson, CCA Volunteers

*Listed are Monetary Donations through 2nd quarter, 2006. We areextremely grateful for these and all prior donations, raffle ticketpurchases, 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. 13

“monster”assist!

Andy Hootman, Ryan Irwin and Heather Lermont-Pape

about a year ago, CCA

board member Heather

Lermont-Pape enlisted the help

of her employer, Monster

Worldwide, to collect used ink

and laser cartridges for CCA’s

rebate fundraising program

through Funding Factory.

Approximately 10 percent of

CCA’s recycle points can be

credited to the efforts of

Monster offices nationwide.

We’d like to thank Heather and

her colleagues for this

“Monster” assist with a special

thanks to Susan Salois and the

IT technicians throughout

Monster North America.

14

calendar of eventsdate event contactSeptember Craniofacial Acceptance AReeves@CCAkids.com

Month 214.570.9099800.535.3643

October 14 Second Annual Friends gdale@stny.rr.comof Jeremy Golf EventWillowcreek Golf ClubBig Flats, NY

December 9 CCA Dallas Holiday Party AReeves@CCAkids.comMedical City 214.570.9099Dallas, TX 800.535.3643

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.

planned giving about half of what you leave behind at death goes for

estate tax. It pays to plan in advance. When you

consult an attorney or investment professional regarding

your wishes for distribution of your assets in your will,

consider a provision for CCA.

Help enable the charity you have embraced to continue

good works in your name.

Your planned gift in the form of an endowment will live

on after you.

cash for trash!

p lease save your discarded cell phones and empty

laser/ink cartridges for CCA. Send them to us or if

you think you can fill a whole box, call us and we will send

you a collection box…it’s all ready to go, labeled and the

UPS shipping is pre-paid.

Thanks for helping!

gifts to cca

you may notice a change in our listing of donor gifts.

We are now publishing a list of our donors quarterly

(in every newsletter) with levels of giving indicated for

total donations to date, so you will have a better

indication of your donor level. (See pages 12-13.)

As always, your gift may be made “in honor” or “in

memory.”

Check for the donor lists on www.ccakids.org as well!

matching gifts

Many companies offer a matching gift

program, and will match your gifts, the

gift of a spouse or retired employee.

This could double or even triple your

gift to Children’s Craniofacial

Association! For a matching gift form

or more information, please contact

your Human Resources office.

Lou Anderson, “CCA’sAngel” as she is referred toin the CCA office, spent allyear in her hometown ofNew London, WI, making aspecial gift for each family.In the past, she hasdonated her handmadeblankets and backpacks.This year, she made travel-sized pillows withpillowcases. Wow! That’s alot of pillows!

And Janice Macut ofHarrisburg, PA, workedtirelessly on awareness, notonly in the Hershey areabut also statewide. She waseven successful in gettingthe Pennsylvania legislatureto proclaim June 24 asCraniofacial AwarenessDay. RepresentativeRonald S. Marsicoattended the dinner/danceand made this excitingannouncement toeveryone.

Robert J. Grim ofCapital Blue Cross alsoattended the dinner/danceand presented CCA with acheck from his company.

CCA is so thankful for allof these wonderful people.Without them, the retreatwould not have been thesuccess it was.

Now, let’s start thecountdown to next year’sretreat in Salt Lake City,Utah. See you there!

Annie Reeves,CCA Program Director

15

thing that needs to bedone. The volunteers at thisyear’s retreat were noexception.

Diana Sweeney ofPhiladelphia, PA, MarthaBrown of Snyder, NY, andRoseanne Opdyke ofChalfont, PA, helpedthroughout the entireretreat. They spent hourshelping stuff goody bags,sort and fold T-shirts, assistwith room prep and doanything else that neededto be done.

Catherine Burzio ofBerryville, VA, helped withthe bag stuffing and tooktime off the dance floor tomake sure each familyreceived their goody bagsduring the dinner/dance.

After traveling all the wayfrom Australia, BiancaMoon joined Lady JaneGoodman of Boca Raton,FL, to help set up tables forall our goodies.

Cher sent Hershey Bucksfor each family to splurgeon treats at Hershey Park.She also sent lots ofgoodies for the goodybags, including T-shirts,CDs, DVDs and hats.

Mary Lou Smithdonated Hershey bags foreach family filled with allsorts of delicious treats, T-shirts, and caps.

Back in Texas, the much-awaited retreat T-shirt wasdesigned by Bruce andRobin Williamson ofCarrollton, TX. And, asusual Robin designed theretreat program andnametags.

program director, from page 1

our new online Web store is now open.

Look at all the great items featuring our

logo which you can purchase to help spread

awareness of CCA!

www.ccakids.org orwww.ccakids.com

n o w o p e n

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 KSilverman@ccakids.com.

The online version is in full color!

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

Families of craniofacial patients often call CCA to seek

emotional support, discuss problems and identify

resources. Through our database, we are able to network

families with support groups and/or others who have

similar conditions and experiences. We also keep a list

of helpful resources and are always willing to listen and

offer emotional support to family members who need a

shoulder upon which to lean. For further assistance or

information call Annie Reeves at 800-535-3643 or email

AReeves@ccakids.com

programs we offer• Toll-free hotline

• List of qualified

physicians

• Information and support

• Educational booklets

• Financial assistance

• CCA Network, a

quarterly newsletter

• www.ccakids.com

Web site

• Annual Cher’s Family

Retreats

• Public awareness

• Family networking

• Advocacy

ccaprograms

Honorary Chairperson:Cher

Board of Directors:Tony Davis, DMD, CHAIR,

Tuscaloosa, ALGeorge Dale, Corning, NYDeborah DeLay, LSW, Fort Collins, CODonna Gossett, Cullman, ALHeather Lermont-Pape,

Indianapolis, INDan Paulson, Fargo, NDRose Seitz, Youngstown, OHRobert 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:Kelly Silverman

Accountant:Don Smith

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 or CCAkids.org

NONPROFIT ORGU.S. POSTAGE

PAIDDALLAS, TX

PERMIT NO. 555

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

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

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

in order to save costs, CCA has always plannedretreats without a site visit. This becomes very

difficult when we have as large a crowd as we didin 2006.

With nearly 400 attendees, space planningbecame paramount. This year, two volunteersstepped forward to help take the guesswork out ofthis task.

Former CCA board member and long-timevolunteer Diana Sweeney and new CCAvolunteer Janis Macut took time out of their busyschedules to travel to the Hershey Lodge on severaloccasions. They assisted CCA program directorAnnie Reeves to ensure everything would beperfect for the families. Diana and Janis met withHershey Lodge staff from early in the planningstages right through to the pre-retreat final details.

CCA staff extends a special thanks—and threecheers—for these two special volunteers!

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

Diana Sweeney

Janis Macut