ccanetwork - Children's Craniofacial Association · 2017. 10. 2. · Celebration of the Cher Show,...
Transcript of ccanetwork - Children's Craniofacial Association · 2017. 10. 2. · Celebration of the Cher Show,...
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messagefrom theprogramdirector
is it just me, or is thesmell of chocolate still inthe 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, volunteersand related support groups are widening the circle ofacceptance 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
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lester LaBrake is twoyears old and lives in LeeCenter, 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
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hello! My name isKayla Smith, but allmy 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.
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ccateen
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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 theyounger 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
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the 4th Biennial CherConvention, held at theWarner 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
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this year’s retreat thebiggest ever for cca
cCA’s 16th AnnualCher’s Family Retreatbroke 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!
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retreat, continued from page 7
vineyard Vines, well-known producer of100% 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!
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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 theFourth 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
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e ach year, Andrew Hartley’s elementary school,Eagleville Elementary, holds an event to raisemoney 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 havetransformed 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 Daysfundraiser 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.
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t he North AmericanCraniofacial FamilyConference, 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
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public awareness aboutcraniofacial conditionsis 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
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
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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)
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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, CCAboard member HeatherLermont-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.
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14
calendar of eventsdate event contactSeptember Craniofacial Acceptance [email protected]
Month 214.570.9099800.535.3643
October 14 Second Annual Friends [email protected] Jeremy Golf EventWillowcreek Golf ClubBig Flats, NY
December 9 CCA Dallas Holiday Party [email protected] City 214.570.9099Dallas, TX 800.535.3643
financial assistance
do you travel to receive quality medical care? If youdo, and need financial help, CCA has a financial
assistance program that will help with food, travel
and/or lodging. Call CCA for an application at 800-535-
3643. All we ask is that you apply at least four to six
weeks prior to your next appointment.
planned giving about half of what you leave behind at death goes forestate tax. It pays to plan in advance. When youconsult 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 emptylaser/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.
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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 ourlogo 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, butwould rather download it from CCAKids.org, let us
know by sending your email to [email protected].
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
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
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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 [email protected] 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 verydifficult 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