messagefrom theexecutivedirector

2010 marks thebeginning of CCA’s

third decade of servingfamilies affected by facialdifferences. In preparation,the board of directors andstaff met for the annualstrategic planning meeting.We reviewed last year’sactivities and updated ourstrategic plan to ensurewe’re on track withprograms and services thatmeet the needs of ourfamilies. And we developedstrategies to provide theresources necessary to fundour plans for the future.

empowering and giving hope to individuals and families affected by facial differences

newsletter of the children’s craniofacial association Cher — honorary chairperson winter 2010

see executivedirector, page 14

when Dammy and I had found out we were having ason, I felt that overwhelming sense of pride and joy

I can only assume all fathers have. I remember sayingthose words during that revealing ultrasound: “That’s myboy.” Our daughter Zoe was two at the time and was soexcited when we told her she was going to have a littlebrother.

The pregnancy was uneventful for the most part, andbecause of complications during Zoe’s birth, we opted fora cesarean birth for Andrew. He wasn’t Andrew at thetime as we were totally unsettled on a first name;however, his two middle names George (for his father)and Scot (his grandfather) had already been staked in theground.

see andrew, page 10

insidecca kidmatthew young. . . . . . . . . 2

cca teenkaylee kramer . . . . . . . . . . 3

cca supersiblauren young . . . . . . . . . . . 4

calendar of events . . . . . . . 5

cca mugshot . . . . . . . . . . . 5

cca bracelets for sale . . . . . 5

friends of jeremy golftournament . . . . . . . . . . . . 6

donors in the spotlight . . . 7

girls’ night out. . . . . . . . . . 8

kids klub . . . . . . . . . . . . . 11

fundraising news . . . 12-13

lily’s dinner . . . . . . . . . . . 15

holiday parties. . . . . . . . . 16

donor list . . . . . . . . . 17-19

testimonial . . . . . . . . . . . 19

financial assistance . . . . . 19

3 cheers . . . . . . . . . . . . . 20

andrew’s storyBy George Davis

THIS ISSUE OF THE CCA NETWORK IS DEDICATED IN MEMORY OF RICK DORNIER

ccanetwork

meet matthew young

ccakid

calls him Daddy Junior,

feeds him every day before

school and loves to watch

him swim.

Matthew really likes

journaling and writing

stories. He wrote a story

about his younger cousin,

Mary, as well as a story

about a teacher he had last

year. This past Thanksgiving,

he spent time listening to

people and interpreted

what they said in even

more stories.

When he’s not writing,

Matthew likes to play

Mario on Wii and other

games with his dad and

younger sister, Lauren.

(He and sis get along great,

by the way.) He has a

handheld DSi that he likes

to play racecar games on,

too. Incidentally, Matthew

likes to go-cart — the real

deal, not the game — and

he’s a pretty good driver.

Matthew spent the

holidays at home with his

mom’s family and his dad’s

parents, who came in town

from Florida for Christmas.

He was mainly happy to

have his dad home. He’s a

helicopter pilot in the

Marines and has been in

Afghanistan for seven

months. He’s home for

good as far as they know.

Matthew wrote a story

about his dad called

“American Hero.”

Matthew was born with

Frontonasal Dysplasia and

has had seven corrective

surgeries so far. Right now

he’s doing great.

He’s been to two CCA

retreats, one in Dallas and

the other in Myrtle Beach.

He’s had a fantastic time at

both and had the chance

to make new friends. He’s

looking forward to the

next retreat in Boston. He

says he “can’t wait!”

matthew Young is

nine years old and

is from Mullica Hill, NJ. He’s

in the fourth grade and

likes going to school,

where he’s met some new

friends. Math is his favorite

subject, and he participates

in his school choir. He also

attends a social club one

day a month, where he

learns social skills and talks

about how to make friends.

Recently, Matthew

finished an animal studies

class at school. At the end

of the class, he had the

chance to adopt a month-

old African bullfrog. He

2

playful and loves to take upthe whole bed at night. I alsohave two ferrets: Skylar, whois three, and Allie, who isone. They are wild and full ofenergy, and they love to playin the cage that my dad and Ibuilt. We also have two cats,Carmel and Callie, who areplayful at times.

When I grow up I want tobecome an animal rescue cop,because I love animals.Animal cops rescue all sorts ofanimals, and I just think thatwould be a really fun job.

I was born withCraniosynostosis with a clefteye, and I have had fivesurgeries to correct this. Evennormal things like going tothe grocery store are

sometimes difficult. Peoplewill ask me if my brotherhas punched me in the face,and I simply look at themand reply, “I was born thisway.” I also get a lot ofstares, and I just ignorethem, but sometimes I stareback or go up to them andask them what they'relooking at.

It has been difficult beingdifferent all my life. It is thehardest thing anyone couldgo through, and I just wantto be like everybody else.But, the coolest thing is Imay be the only one in theUnited States who hasCraniosynostosis with a clefteye.

meet kayleekramer

ccateen

hi, my name is KayleeKramer. I am 14

years old and I am in the8th grade. I live inSomonauk, IL, with myparents, my brother andmy sister.

First, a little about myfamily. My dad, Dan, worksas a welder. I like to spend alot of time with him. Mymom, Dena, runs a daycareat home, and I help her out

whenever she needs it. I liketo go shopping and go forwalks with my dog Duke andwith my mom.

My sister, Amber, and Ilove to go shopping, get ournails done and dance in thecar like rock stars. She is 17years old and reallyawesome. My brotherBrandon is 15, and he playsbaseball, videogames andeats — a lot! We sometimeshave a fun time drawingtogether.

Now, let me tell you a littleabout me. I like to draw,watch TV and laugh with myfriends. I also play soccer forthe Somonauk Bobcats. Myfavorite positions are goalieand forward.

Now, a little about myanimals. My dog Duke is thenewest member of thefamily. He is a yellow lab andis almost a year old. He's very

3

my name is Lauren,and I am eight

years old. I am currently inthe third grade at SaintMargaret’s School. I livewith my mom, dad andolder brother Matthew inMullica Hill, NJ.

My favorite sport isbasketball. I also playsoftball and have takendance lessons since I wastwo years old. In my freetime, I love to play the Wii(Yoshi is my favoritecharacter), swim in my pool,read books, ride bikes andsurf the waves down at thebeach in the summer.

I also like to listen tomusic. I just went to myfirst concert and saw KellyClarkson. I had a greattime, and hope to see heragain.

Dolphins are my favoriteanimal, and when I growup I hope to become adolphin trainer.

In 2008, I went with myfamily to the CCA retreatin Myrtle Beach, SC. I sang“Take Me Out to theBallgame” with my brotherfor the talent show. Thispast summer, I went to theretreat at the Great WolfLodge with my brother andmom. (My dad is ahelicopter pilot in theMarine Corps and wasdeployed to Afghanistanfor seven months, so hecould not come with us.)I had a fun time in thewater park and enjoyedmeeting new friends.

I also enjoy going to theSib Shop at the Children’sHospital in Philadelphia.

At the Sib Shop, I get tomeet other kids who havespecial brothers or sisters.I have made many friendsthrough the Sib Shop andCCA retreats, and I can’twait to go to Boston thissummer.

ccasupersib

meetlaurenyoung

4

5

cca mugshots

CCA Kid Henry Johnson of Turlock, CA with his CCA mug

“Beyond the Face is a Heart” wristbandsThe great response to our CCA bracelets has prompted us

to sell them throughout the year!

Bracelets are $1 each

Available in the 5 colors of CCA’s logo faces:

royal, orange, teal, purple, lime

Sizes: 8” (universal/adult) and 7” (small/child)

To purchase and/or sell, email or call JillJPatterson@ccakids.com • 800.535.3643

bracelet sales continue!

become cca’s “friend”on facebook!

cCA now has its own facebook page and cause!

You can look us up by simply searching for

Children’s Craniofacial Association!

h&r blockif you’re not already a customer of the H&R Block folks

for your taxes, having your return done for 2009 with

their help will also help CCA!

H&R Block will donate $25 to Children’s Craniofacial

Association if you designate CCA as your charity when you

have your taxes done there! Call Jill at CCA for a form.

calendar of eventsdate event contactMar 7, 2010 3rd Annual Henry’s March laurynhenry@sbcglobal.net

for CCA 5k Fun Run myspace.com/henrysmarchCSU, Stanislaus 209.664.0500Turlock, CA

Jun 24, 2010 Craniofacial Symposium AReeves@ccakids.comHyatt Regency Cambridge 214.570.9099Cambridge, MA (overlooking Boston) 800.535.3643

Jun 24-27, 2010 20th Annual Cher’s AReeves@ccakids.comFamily Retreat 214.570.9099Hyatt Regency Cambridge 800.535.3643Cambridge, MA (overlooking Boston)

Jul 25-30, 2010 Camp Courage www.choa.org/campcourageAtlanta, GA

Jul 30-Aug 1 Moebius Syndrome Conference Coloradomoebius2010@q.comMoving Mountains for Moebius Vicki@moebiussyndrome.comBloomfield, CO www.moebiussyndrome.com

303.814.2144 or 660.834.3406

Aug 28, 2010 5th Annual Wendelyn’s Course wendelynyvonne@hotmail.comof Dreams Golf TournamentCountry Club of ArkansasMaumelle, AR

Sep 11, 2010 4th Annual Seth’s Stride mythreekids@neo.rr.comfor CCA Stacy SwihartCanton, OH www.firstgiving.com/sethsstride

Sep 2010 Jylian’s Links of Love JPatterson@ccakids.comGolf Tournament www.ccakids.orgLocation TBA (Texas) 800.535.3643

Sep 19, 2010 Smiling Through the Mask – wendelynyvonne@hotmail.comA dinner to benefit CCARestaurant 1620Little Rock, AR

Sep 25, 2010 Little Fire, Big Heart TarynSkees@gmail.comDinner/Auction www.littlefirebigheart.comMelwood Art CenterLouisville, KY

Oct 2, 2010 6th Annual Friends of Jeremy gdale@stny.rr.comGolf Tournament www.friendsofjeremy.comCorning Country ClubCorning, NY

the 5th Annual Friendsof Jeremy Golf

Tournament was held onSaturday, October 3, at theCorning Country Club inCorning, NY. As always,we had an incredibleturnout and overwhelmingsupport from thecommunity, our co-workers, friends and family.

One hundred sixteengolfers came out to havefun and show their supportfor the kids of CCA. Wehad a record number oftournament and holesponsors and tremendoushelp from local businessesand national organizationswho donated prizes andsilent auction items.

The tournament includeda raffle, silent auction,closest to the pin 50/50,closest to the line prize anda skins game. Our local cardealership, Simmons-Rockwell, sponsored anew car prize for a hole-in-one contest. Unfortunately,no one won the car, buteveryone had fun trying!The event was a hugesuccess — we netted$28,000 for CCA!

This year we celebratedour fifth anniversary of thetournament by recognizingthe individuals andbusinesses that havesupported the event eachof our five years.

Individuals were given aFriends of Jeremy blanket,and businesses werepresented with arecognition plaque.

The tournamentcontinued to be advertisedthrough local newspaperand TV stations. Jeremywas again joined this yearby a few of his CCAfriends, Andrew Perryfrom Massachusetts andRyan Gulich and SophiaLorenz from Big Flats, NY.Their participation in thetournament helped raiseawareness of craniofacialconditions. The finalhighlight of the event waswhen CCA kid AndrewPerry, won the 37-inchSharp LCD TV donated byCorning Incorporated.

We are so grateful toeveryone who supportedthis event and the kidsfrom CCA. For moreinformation and to seephotos from thetournament, visitwww.friendsofjeremy.com.

5th annual friends of5th annual friends of jeremy golf tournamentBy Kristine Dale

6

this issue we feature donors, Fred and Judi Freeman ofTucson, Arizona. Fred and Judi have been supporters of

Children’s Craniofacial Association for many years. Theirgrandson, Robbie, has grown up with CCA and they seethe value of our programs and services first hand.

The Freemans give through their local United Way. CCAreceives quarterly checks from the United Way of Tucsonand Southern Arizona, gifts from “The Fred and JudiFreeman Charitable Fund.” They tell us they give this sameway to their church and all the causes they support.

We’re extremely grateful to these folks for their kindnessand for their ongoing contributions. Thank you so much!

cCA is pleased to

announce our bike

winner: Tucker Woods,

of Lindon, Utah!

In December, CCA

held a drawing for a

Johnny Pag

Motorcycles ProStreet

and Tucker's name was drawn by John, a member of the

Italian Club of Dallas. Club members were volunteering

at our CCA office that day, helping with our newsletter

mailing. Tucker purchased his raffle tickets at “Lily's

Dinner” (see page 15). The lucky winner chose the black

edition of the bike and we'll be sure to publish a photo of

him with the bike in an upcoming newsletter issue. Special

thanks to Johnny Pag, to CCA families and friends who

helped sell tickets, and to

all who purchased them.

Congratulations Tucker!

motorcycle raffle winner!

www.johnnypag.com

cca 20th anniversaryt-shirts

our limited edition20th Anniversary

Logo T-shirts are stillavailable for purchase at$20 each (actualshipping-weight chargeswill be quoted). Or one T-shirt is free, uponrequest, with a singledonation of $100 or more.

We still have the following sizes available: Adult sizes,S, M, 2XL, and 3XL. And we’re happy to announceyouth sizes are still available: XS (2-4), S (6-8),M (10-12), (L youth, order S adult).

H

HH H

HH

H

20 Years of Giving Hope1 9 8 9 - 2 0 0 9

goodsearch & goodshop

every time you shop online at your favorite stores youcould be saving money and earning a donation for

Children’s Craniofacial Association.Our new toolbar, developed by GoodSearch &

GoodShop takes just a few seconds to download. Morethan 1,300 top stores including Apple, Best Buy, Gap,PetSmart, and Staples are pitching in and will donate apercentage of each sale to our organization. There's noextra cost to you and you may even save money as themerchants are providing us thousands of money-savingcoupons!

The GoodSearch toolbar also includes a search boxwhich is powered by Yahoo! Each time you search theweb, about a penny is donated to us!

There's no easier way to help CCA. Please spread theword! Here's a link to the toolbar for more information:http://www.goodsearch.com/toolbar/childrens-craniofacial-association-cca

donors in the spotlight

7

8

making important decisionsabout a potential new“look,” they wereunderstandably a bituneasy.

The evening started witha fun and noisy pizza party,hosted by Alycia Roland, aformer patient of thecenter, now a successfulbusinesswoman. Everyonehad a chance to getacquainted and unwind.The girls had a chance tolook through stylemagazines for inspirationand talk with some oldergirls from Sigma SigmaSigma sorority, whovolunteered both their timeand their fashion savvy.

Greg and Carol Nestor,the owners of NesbittSalon, opened the doors ofthe fashionable salon forthe event. Along with anincredible group of staffvolunteers, the Nesbittteam donated their servicesfor the evening. Afterdinner, the girls werewhisked away to begintheir individualizedtreatments. It was difficultto tell who was having abetter time — the girls,their families as theywatched thetransformations, or thesalon staff who worked sohard to make the eveningperfect for each girl. “Theevening surpassed

everyone’s expectations,”said the center’s director,craniofacial surgeon Dr.Jennifer Rhodes.

The program, funded bya grant from the MCVHAuxiliary of VCU HealthSystem, takes place eachquarter for a differentgroup of patients.“Growing up is hard to do,but when you have a facialdifference, the teenageyears can be especiallyharsh,” said Dr. Rhodes.“We want to support ourpatients’ emotional needsby doing what we can tohelp boost their selfesteem. Getting togetherwith peers who have hadsimilar life experiencesreally helped our girls feel

and Craniofacial Care inRichmond, Virginia.

For the girls, it was anextraordinary evening. Theywere the first participantsin “Girls Night Out,” a newprogram created for girlswith facial differences. Thegirls were treated to anevening of pampering,including new hairstyles,manicures, facials andmakeovers at the NesbittSalon in Richmond.

As the girls entered thesalon with their families,their excitement wasvisible, but so was a certainamount of nervousness.Some of the girls hadtraveled hours toparticipate. Faced withmeeting new peers and

girls’ night outThe Richmond, Virginia, Center for Cleft and Craniofacial Care knows girls just want to have fun.

the music was pulsing,the lights of the salon

sparkled and stylistschatted with their clients astheir scissors flashed andsnips of hair fell to thefloor. Upstairs, the moodwas completely different,as soothing tunes andaromas of flowers filled theair. Dim lights and candlesprovided just enough lightto allow the clinicians toconcentrate on applyingsoothing ointments as they

massaged the faces of theirclients.

Not an unusual scene fora high-end salon, but thisnight was special. Thesalon was hosting anexclusive party for teenagegirls who are patients atthe VCU Center for Cleft

“I feel so beautiful,” saysCarleigh, born with Treacher-Collins syndrome.

Destiny, born with hemifacial microsomia, chats with her stylistwhile her family looks on.

comfortable andaccepted.”

The “Girl’s Night Out”program was designed tofoster self-esteem inpreteen and teenage girlswho are followed by theVCU Center for Cleft andCraniofacial Care.Teenagers with facialdifferences often feelisolated, not realizing thereare other teens facing thesame problems. Theprogram provides girls withfacial differences theopportunity to be a part ofa peer network, animportant aspect of normaladolescence. “It let a

bunch of girls with similarproblems relate and relax!”stated Carleigh Dahmen,age 14, who was bornwith Treacher-Collinssyndrome.

Dr. Rhodes and RuthTrivelpiece, the center’sclinic coordinator, alsorecognized that teens can“burn out” while goingthrough their lengthy andcomplicated treatmentplans. This treatmentfatigue, along with thenormal adolescent struggleto assert independence,can contribute to less thanideal patient compliance.Dr. Rhodes and Ms.

Trivelpiece hopethe program willallow the teensto realize theteam is workingwith them toachieve theirpotential inmany differentareas.

“We had theopportunity tointeract with thegirls and theirfamilies onanother level.They saw us aspeople, not justhealth careproviders. It wasa very fulfillingexperience,”said Dr. Rhodes.

As the evening came to aclose, it was remarkable tosee the girls’transformations. Each girlposed for a glamourportrait, exhibiting a senseof self confidence and aninner ease that was morethan just a result of theirspa treatments. There wasa new sense of confidenceand an ease that wasapparent, not just withother participants, butwithin the girls themselves.

As each girl posed forher final portrait, thefamilies, salon and centerstaff gathered aroundexcitedly to share theirstories and say goodbye.Hugs and high fivesabounded. As one of thegirls stated, “I can’t believeI have to go home now. I

feel so beautiful—I’m readyto go out and show off thenew me!”

Based upon commentsand suggestions from theattendees of the first “GirlsNight Out,” along withinput from the volunteers,the next “Girls Night Out”will only get better. And Dr.Rhodes is not ignoring theboys—plans are underwayfor a fun-filled event thatwill appeal to teenage boysfor their own special “Boy’sNight Out.

Call 804-828-3042 orvisit us atwww.craniofacial.vcu.edufor more information aboutthe “Girl’s Night Out”program or the VCUCenter for Cleft andCraniofacial Care.

9Finishing touches bring a smile to Elizabeth,born with bilateral cleft lip and palate.

Katherine, born with Pfeiffer syndrome, gets a new look just intime for her high school graduation.

see girls’ night out, page 14

Andrew was 24 hours old.When I realized that hewas in Dallas, about a one-hour drive, we were veryexcited to get a chance tosee him.

Andrew didn’t cry, andhe couldn’t hear more thanyou or I could if weplugged our ears with ourfingers. He failed thehearing test at the hospitaland was classified as a deafbaby.

There was concern withAndrew gaining weightbecause of his cleft andlosing as much milk as hewas swallowing, so we hadmultiple swallow studiesdone. Watching youryoung, helpless infant sonstruggle to swallowanything thicker than milkwas quite sad, and Momand I shed more than afew tears during thediscussions with doctorsand nurses.

We decided againstinserting a “g-tube” or“button,” and we weretold quite frankly that if wetook Andrew homewithout inserting a feedingtube that he would die andthe hospital wouldn’t beheld responsible. Andrewcontinued to nurse for twoyears and never fell belowthe normal weight for hisage, nor did he have oneupper respiratory infection.He learned to adapt to hisenvironment very well.

We visited many doctorsand specialists duringAndrew’s first year — from

audiologists andanthropologists todieticians and so on.

We met Brooke,Andrew’s first audiologist,who performed detailedhearing and response testson Andrew and ultimatelydetermined that hishearing could be correctedwith the use of aconductive hearing aid.Since his inner ear waspresent and functioningnormally, he simply neededto get the sound from theoutside world to his innerear since it could not travelnormally through the earcanal. He was fitted withfor a BAHA (BoneAnchored Hearing Aid).

When we went in to seeBrooke and try on thehearing aid, it was aglorious day. You could seeAndrew’s face light upwhen he heard for the firsttime with his BAHA.Technology is a great (andexpensive) thing.

As I worked full time,Dammy played the roles ofmother and superorchestrator. She gotinvolved with ECI (EarlyChildhood Intervention),who visited the house atleast once a week andprovided a great service forher and our family. We hadsign language instructors,occupational therapists andspeech therapists whoplayed major roles inAndrew’s advancedlearning and development.

andrew, from page 1

We arrived at the hospitalconfident that this wasgoing to be a muchsmoother experience thanthe emergency c-section wewent through with Zoe.How quickly we would beproven wrong.

I still remember those firstfew moments like it wasyesterday. When Andrewfirst saw the light of thisworld and I that red hair itwas evident we would havetwo little red heads on ourhands.

As I kissed Dammy andwalked over to the weighingstation, the nurse started toclean him up. She then saidthe first words that indicatedthat something wasn’tnormal. “His ears are a littlelow set” she said. Myresponse was a confusedand sarcastic, “A little?”

As the doctors tended toDammy, and my motherkept the camera rolling foranother minute, I got theweird sensation that she feltDammy shouldn’t seeAndrew now. Then the tapestopped as a new world forus was beginning. He wascute as a bug with curly redhair.

I carried our son over tomy wife and laid him on herchest and we cried with joyfor the birth of our son.

Within the hour, he wasnursing despite the fact thathe was born with a Tessiertype 7 cleft, whichessentially is a defect in thecorner of the mouth that

never closed, giving him anomnipresent smile.

Also, within the hour, Ihad the laptop in hand andwas searching the Internetfor “facial malformations,”which was absolutely theworst thing I could haveever done, but what it didwas prepare us for theworst.

In addition to the cleft, itappeared (and was laterconfirmed) that he hadbilateral microtia withatresia and bifacialmicrosomia. Medicallyspeaking, microtia means“small ear,” and atresiameans “no ear canal.”Microsomia means “smallface.” Some of hischaracteristics were verysimilar to Treacher Collinsand other syndromes. Wefeared the worst andsimply needed help,answers and education.

I also searched on theInternet for specialists andsurgeons who helpedcorrect some of thesedifferences. I even sent aphoto of Andrew to Dr.Jeffrey Fearon before

10continued next page �

11

In fact, some of them havecontinued to be a part ofour extended family. I wantto mention Mrs. LaurenRoe with Jumpstart Center.She is one of the majorreasons Andrew is at thelevel he is today with hisspeech.

Andrew underwent hisfirst surgery when he was ayear old to repair the cleftin his lip. This was a verysad time for all of us. Wewere going to be foreverchanging Andrew, and hewould never look thesame. Although this was avery tough decision, weknew that it was in his bestinterest. The hardest partfor us was to knowAndrew would be underanesthesia, but the hardestpart for Andrew was goingto be nursing with thismedical super tape holdingthe two sides of his liptogether. He healed

beautifully and only hasminor scarring.

Andrew is one of themost amazing kids I know.He has never allowed hishearing impairment to holdhim back. He is a go-getter, loves attention andjust wants to be loved allthe time. He has his sisterZoe there to “mother”him, and he loves it(although he likes to fightwith her from time totime). He started a Pre-Kfor 3-year-olds this year aswell as a deaf-ed programwithin our local ISD, andhe is doing fabulously. Hehas an incredible supportsystem at home andschool. I see a very brightand vibrant future for myson.

cca’s yahoo support groupsCCA is now offering support groups for 3 ages!

Middle School Age:

http://health.groups.yahoo.com/group/ccateens_middleschool/

High School Age:

http://health.groups.yahoo.com/group/ccateens_highschool/

Adults:

http://health.groups.yahoo.com/group/ccakids/

If you would like to join one of our online supportgroups, please visit the links above or contact CCA’sProgram Director, Annie Reeves, areeves@ccakids.com

For a complete list of ourprograms and services, visit:

www.ccakids.org/prg.asp

want to stay in touch with your CCA friends

throughout the year? Join one of CCA’s Kids Klubs.

You’ll talk with other kids your age, make new friends,

play games, and take part in discussions. Sign up for one

of four age groups: Kindergarten through third grade,

fourth and fifth grades, sixth through eighth grades, and

ninth through twelfth. Each level has age-appropriate

activities that will keep you connected. So join your CCA

friends now and let the fun begin!

Contact Annie Reeves for a Kids Klub application today!

KKiiddss KKlluubb

KKiiddss KKlluubb

Kids Klubs

held on October18, 2009 at the

Aventura MallCenter Court inAventura, Florida, the2009 ChocolateFestival was anothersweet adventure for

shoppers! Chef Rick Chiavari, executive chef of PortoVita restaurant and Aventura Mall's Laura Nicholsteamed up again along with many local “chocolatiers”and chefs, to create incredible desserts all made ofchocolate! In addition to Aventura Mall, sponsors of theevent included Porto VitaProperty OwnersAssociation, Joe &Trina Cayre, DPProperty Holding LLC,Combined Resources,LLC, Mark J. GordonFoundation, SapoznikInsurance, SpotmasterCleaners, Epic Residencesand Hotels, Gym Kidz, CailisMechanical Corporation and Pro-Tech International.Chef Rick is the uncle of CCA kid, Seth Swihart ofCanton, Ohio. He and Seth's aunt, Laurie, cousins,Kelsey and Brett, Laurie's dad, Leo, and many friendsincluding Elaine, Janet, Jamie, Renée, Harley, Dylan,Mishelle and Eileen all volunteered to make the day runas smoothly as Chef Rick's chocolate fountain! Chocolatelovers purchased tickets for $1 each or $10 for 13 ticketsand traded 1-3 tickets for a taste of each full-sized treat.This year folks were also enjoyed chocolate-themedfashions, raffle drawings, music, auctions, a super bowltrophy created in chocolate and a giant CCA logo

chocolate bar! Manythanks to all whoparticipated with donating,creating and buying theyummy delights raising over$23,000 for Children'sCraniofacial Association!

tamale fundraiser

the Community Relations Team (CRT) from the BoozAllen Hamilton firm (Houston) and the Aldine Church

Ladies Group have teamed up again in support ofCraniofacial Awareness Month and in honor of CCA Kid,Natalie Wardlaw by making, selling and buying tamales!

The CRT at Booz Allen donated all the items required tomake the tamales. Aldine Church ladies – RosieMartinez, Norma Navarro, Margarita Cortez,Esmeralda Garcia, Juanita Veliz Yadira Rivas, NereidaHernandez, Abigail De Los Reyes, and GracielaGuzman made at least 1,440 tamales which werepurchased by Booz Allen employees, NASA civil servantsand other contractors. Former lead of the CRT, LornaWallace and current leads, Angela Cason and AlexaRamby helped Abigail De Los Reyes – friend of Natalie'smom, Jennifer – coordinate another successful effort.Along with additional donations from the Booz AllenHamilton firm, the group brought in over $1,000 in theprocess! That's a hot tamale!

snowman auction

ms Tracy Tidwell's Gifted and Talented studentsof the Barbers Hill ISD crafted snow people and

auctioned them off online. Over $500 in proceeds came toChildren's Craniofacial Association in honor of CCA kid,Wade White, whosesister, Antasia, is oneof the GT students inthe Primary school.

second annual chocolatefestival for cca

fundraising news

12

denim day

at the suggestion of one of their employees, AlcanCable, in Atlanta, Georgia, held a casual-dress day at

their company and collected $600 for CCA. Thanks toeveryone there!

penny drive

angela Marcum and Lincoln Heights Elementaryschool held another Penny Drive among students and

sent in over $500 dollars for Children's CraniofacialAssociation. Thank you!

chili cook-off

petroCasa Energy in Fort Worth, Texas, held a ChiliCook-off for employees to enjoy and to help raisefunds for Children's Craniofacial Association.

Coordinator, Dan Cherkassky notified CCA and over $400was delivered to our office following the effort. Thanks!

pampered chef

jessica Dornier held a Pampered Chef funder, raising$300 to benefit Children's Craniofacial Association, inhonor of her son, Rick. Half of the proceeds came from

Pampered Chef for Jessica's efforts getting orders and halfcame from Bobby Mayo, her Pampered Chef consultant!Many thanks to both Jessica and Bobby, andto all who participated.

Watch for a recap of some notable2009 Firstgiving fundraising pages forCCA in our next issue!

merry microwave!

merry Christmas wishes came to theCCA office in the form of a new

microwave oven for our “kitchen”! Jim andBeverly Butera, long-timesupporters/volunteers of Children'sCraniofacial Association (and parents of CCAstaffer, Jana Peace) replaced a dangerously oldone for us. THANKS SO MUCH!!!

fundraising news

13

mr. mistletoeand theelves intraining

stephen Orban andfellow 8th graders,

Joel Evans, Bob West,Jake Henson and Joe Henson from Troy Jr. High in Troy,Ohio put together a horn ensemble and performed overthe holidays at several events. One was a luncheon atEmerson Climate Technologies, Inc. The companyoffered to make a contribution to a worthy cause to thankthe group, “Mr. Mistletoe and the Elves In Training,” fortheir entertainment. The five horn players chose Children'sCraniofacial Association to honor Stephen's cousin, AveryLytle of Pennington, New Jersey “for all she's beenthrough.” CCA is extremely grateful for a $150 donationbecause of these generous, talented and caring kids andwe wish them much success!

holiday giving

angela Cronin, mom of CCA Kid Megan Cronin, tellsus she got a call from one of the employees of her

mother-in-law, Fran Cronin. Fran is the Activities Directorfor Wesley Health Care Center, a nursing home inSaratoga Springs, New York. Her employees wanted to gether something for Christmas and decided to make a

donation to CCA in her name!Thank you to Fran for inspiring such

meaningful giving and to her gift makers,Cheryl, John, Wanda, Sandra, Kathy, Lynn,Bridget, Colleen, Cathy, Sarah and Pat!

funds for cca

employees at the headquarters of the SolisWomen's Health Centers collected funds

for charity at Christmas and this year, choseChildren's Craniofacial Association to receivetheir gifts as Margaret Jenna, mom of CCAKid Elizabeth Ivy Dalton, is an accountantthere and put in a good word. Thank you to allfor this generous contribution.

Jake Henson, Stephen Orban, JoelEvans, Joe Henson and Robert West

$175,000

2009 FAMILY FUNDRAISERGOAL THERMOMETER

100%

90%

70%

50%

30%

10%

80%

60%

40%

20%

Increasing the number offamilies we serve remainsour most important goal.We want to be sure therearen’t families out theremaking this difficult journeyalone. To reach morefamilies, we are continuingto spread awarenessthrough CCA’s NationalOutreach Program.

This year, we’ll continue topublish educationalmaterials. Two syndromebooklets, discussing vascularmalformations andfrontonasaldysplasia, willround out our series ofguides. We also plan topublish articles addressingsleep apnea as well as footproblems associated withApert syndrome. We’ll finishtranslating our booklets intoSpanish and begin work ontranslating the website. Inaddition, we’ll continue toenhance CCAKids.org,publish quarterly newslettersand hold four webinars.

Also, we will hold the 20thAnnual Family Retreat inBoston and, in conjunctionwith it, the Second AnnualCraniofacial Symposium.

CCA board and staff wantto thank all our families forjoining the efforts on somany levels. Together we’remeeting our goals andobjectives toward serving allindividuals and familiesaffected by facialdifferences.

Charlene SmithExecutive Director

The creation and successof “Girls Night Out” is adirect reflection of thevision of Dr. JenniferRhodes, Virginia’s onlydedicated craniofacial andpediatric plastic surgeon.Dr. Rhodes attendedmedical school at theUniversity of Pennsylvaniaand completed residenciesin general surgery andplastic surgery in New YorkCity at St. Vincent’sHospital and MontefioreMedical Centerrespectively. She completedher craniofacial fellowshipat The Craniofacial Centerin Dallas, Texas, under thedirection of Dr. Jeffrey A.Fearon. In 2008, Dr.Rhodes became theDirector of the VCU Centerfor Cleft and CraniofacialCare at the VCU MedicalCenter in downtownRichmond.

The medical center is onthe forefront of healthcare, providing patientswith some of the mostprogressive treatments andtechnology available Inadditional, it has receivedseveral national honors forleadership in humanresources, includingbecoming one of thenation’s top 100 bestcompanies for workingmothers by WorkingMother magazine.

Dr. Rhodes stronglybelieves in providingcoordinated

executive director,from page 1

interdisciplinary care forchildren with complex andunusual craniofacialanomalies. Her teamconsists of pediatricspecialists from craniofacialsurgery, neurosurgery,ophthalmology,dermatology, interventionalradiology, audiology,otolaryngology, genetics,speech pathology,psychology, dentistry,orthodontics, oral andmaxillofacial surgery,occupational therapy,clinical anthropology,nursing and a cliniccoordinator. Thisinterdisciplinary teammeets several times amonth to evaluate patientsand develop anindividualized, coordinatedand integrated treatmentplan for each patient.

“We’re here to help ourpatients and their familieswith all aspects of carerelated to their conditions.During new patientevaluations, we spend asmuch time as needed withfamilies. No family leaveswith any questionsunanswered,” said Dr.Rhodes. “We prideourselves on being aresource center for bothfamilies and communityhealth care providers. Welet our families know thatwe will be there with themas their children grow fromprenatal and pre-adoptionneeds to psychological

counseling during theturbulent teenage years.”

The center also providesa variety of services,including prenatalconsultation for expectantparents. The discovery of acraniofacial condition onprenatal ultrasound cancreate a stressful situationfor expectant parents.Understanding thediagnosis, and the type ofcare their baby will need,helps put families at ease.

Knowing that the centeris there for support andadvice, as well ascomprehensive treatment,is a real help for families.During the prenatalconsultation, cliniccoordinator RuthTrivelpiece, talks toparents about theiremotional needs as theyprepare for the birth. Shealso provides support andeducation to the families,including instruction inspecialized feedingtechniques for babies bornwith craniofacial anomaliesincluding cleft lip andpalate.

Despite Dr. Rhodes’ busysurgery schedule, she andMs. Trivelpiececontinuously work toimprove care for thecenter’s patients. Gatheringfeedback from families hashelped Dr. Rhodes focus onways to make clinic visitsand hospital stays a morepositive experience.

14

About Dr. Rhodes and the VCU Center for Cleft and Craniofacial Care

girls’ night out, from page 9

lily’s First AnnualCraniofacial Awareness

Dinner and Silent Auctionwas held on Saturday,September 26, 2009, atNoah’s in Lindon, UT. Wehad an amazing turnout.More than 100 guestsattended.

We also received morethan 100 great items forthe silent auction.Everywhere I went to askfor sponsorship ordonations, it always wentbetter if Lily was with me.She would politely smileand thank them, withoutbeing asked. It was soadorable!

I feel like we reached anew level of awareness in

our community, and fromthe comments I received,we touched many people.Lily was the princess of theevening and was thrilled tohave a dinner named afterher.

Our evening started witha delicious dinner cateredby Tucano’s Brazilian

Grill. I put together a shortpresentation, introducingCCA, Lily and a few of herCCA friends. We had aspecial presentation byLily’s wonderful surgeon,Dr. Louis Morales. Wewere so fortunate to havehim come and spend histime and educate our

family and friends oncraniofacial conditions.

The night closed with thefinal bids on the silentauction items. It got a littlecompetitive in the finalseconds, but everyone hada great time. We raisedmore than $8,000 total injust one night of fun, foodand good times. All thehard work and preparationdefinitely paid off! I alreadyhave ideas for next year,and we will need toexpand to a bigger place!Lily can hardly wait.

I want to give a specialthanks to everyone whowas willing to lend ahelping hand. This was noteasy to do, and witheveryone’s help, we madea very successful and funnight of it! Thanks to ourfamily, friends, neighborsand supporters. We wouldlike to thank those whodonated items for theauction, money, time orboth. Our family felt somuch love and supportthat it was absolutelyincredible. Thank you!

15

fundraising news

dinner and silent auction heldfor craniofacial awareness

H E L P F U L T I P !

SafeLinkSubmitted by Darnell Menard

safeLink Wireless is a government supported programthat provides a free cell phone and airtime each month

for income-eligible customers. For information, please visitwww.safelink.com.

README!

CCA Kid Miranda Larkin’s artworkfor the CCA Kids’ Klub “FavoriteHoliday Challenge”

Dallas

cCA, together with Dr.Jeffrey Fearon,

hosted its 20th annualholiday party at SouthforkRanch, in Parker, TX, onSaturday, December 12th.Around 500 attendeesjoined us for a morning fullof fun!

Radio Disney was onceagain the entertainment,and everyone reallyparticipated in the fun,music and games. Theparents had just as muchfun as the kids, especiallyduring the hula hoop anddance contests! Everyoneenjoyed cake and punch aswell as arts and crafts. Thekiddos decorated their owncookies and picture frames.

The firefighters ofParker County joined us,bringing a real fire truck for

the children to see. And theDallas Stars Ice Girls werethere and gave autographs.The snakes made theirsecond appearance andwere a hit—even Santaheld one!

Families went home withlots of door prizes, whichwere donated by severallocal businesses. Prizes

included giftcards to theGreat WolfLodge, a giftcertificate to theMagic TimeMachine, passesto the FortWorth Zoo and

the Dallas Zoo, passes toAMC theaters, a FriscoRoughRiders merchandisepacket and autographeditems from the TexasRangers and gymnasts,Carly Patterson andNastia Lukin!

As always, the highlightof the party was the bigman himself, Santa Claus.Children had their picturestaken with Santa, andeveryone went home witha keepsake photo and toy.

CCA would like to thankSouthfork Ranch forhosting, as well as theirwonderful staff! A hugethank you goes out to ourwonderful volunteers fromthe Italian Club of Dallas,CCA Parent, April Gormanand all of her friends whocame out to help as well asCCA friends Richie Cookand Adam Golden.

Midwest

mr. and Mrs. Santaand an elf stopped

at the Parkway Chateauin Kenosha, Wisconsin to

visit with CCA kids andfamilies who got togetherfor a pizza lunch, crafts and

visiting. Mom MarlaVerdone of Janesville,Wisconsin, helped plan thegathering and herdaughter, Lara passed outdrawing paper and mannedthe craft table. Regularsjoined a few new familiesand lots of visiting madethe afternoon successfuland fun. Kids sat on Santa’sknee for photos and to tellhim what they wanted forChristmas, raffle ticketswere distributed for doorprizes, and a good timewas had by all. See younext year!

holiday parties

16

17

Gifts fromIndividuals

CCA Supporters(up to $100)

Mike & Susan AkinCarolyn AllowayRonald & Lori AngelJacqueline & Mark AngelilliAnonymousIlda ArcariLynne ArthurRuth AryeeGary BakerKathy BarnettThomas & Candace BartonSharon BartooJuanita BattleGlenna & Michael BeatyLinda & Robert BellisGlenn BerardEleanor & Charles BerglundDavid BernsteinTammy & Andrew BerryKathleen BestDonna BlairJoel & Yael BlasbergPerry & Arlene BoalKevin & Julie BonahoomCarolyn BonfantiDebra & Justin BonoMargaret BordonaroMike BoskoKevin BradenEdward BrooksSharon & Thomas BrownDavid & Suzanne BrowningDave BhavnaJoseph & Ruth BurnsAnn ByrdJohn & Florence CabeChristian CallensEmil CastagnaRuth ChiavariFrank & Kathleen ChisholmRobert & Kim ChristiansenJudith & Joseph Clonan, Jr.Richie Cook & Adam GoldenRex CoppockCarla CortezTawna Dixon CoutoTara & Roger Cristobal-RiveraTheresa Bowling CroughenJeff CroweRuth & Gerald DankelsonJohn & Linda DavisJosephine & Frank Deronja, Jr.Patricia DigeronimoSuzanne Dolby-DawsonJudy DonaldsonRobert & Amanda DornerKathleen M. DunnM.L. & Ann EkasLindy EriksenPatricia ErnstMarlene & Eric EspinosaRamona Eutsler

Tammy FerlandJulie & Patrick FoleyMichael FordEric ForseterElizabeth & Lawrence ForteRobert FosterDelores & Patrick FoxTammi FroningLinda GaidaJeremy GaigeJoyce & Robert GallantWinthrop & Delores GeorgeFrank & Maryann GilsonHarold GlaserMax & Pamela GoldsteinSylvia GonzalesL. GoodwinReynold GravinaLecerrell GreeneJennifer R. GrovesMaurice GutzlerPaul & Sandra HardyCharles HaydenGerard HelvitzBrad HemmahAmparo HernandezSteven Hernandez, Jr.Amberly HicksRobert HinesO. Gordon & Juanita HirschiMandie HiznayMargaret & Michael HoganAshley HolbrookEdward HorwitzWilma JabbalMeggan JamisonDale & Joan JennerjohnCathleen JohnstonCrystal DeLong JonesJohn KappAnn KarpenCraig & Cherie KendrickMichael & Kathryn KevanyJill KendrickLinda & Rudy KessmanRonald KitsonKendall & Susan KlingeJulie KondonSusan LairdJack & Beverly LandersTom & Barbara LawhonW. David & Rhonda LeonardLexie LermontDiana LeskoJess LevyaDamian LivelyJohn & Mary LivingstonMarcia & James Loebsack, IIIMargaret & Wyane LoebsackGloria LouisSylvia & John LovingKenneth LubyRenee LucckinoEmily & Jon LukowskiDoris & Norbert LustineWilliam John LuybenJohn LyonDoris Capps MabryJames MacaulayJoan Maddock

Duane & Janine MadduxMarty MasheKelly McDadeDebbie & Patrick McDanielPeggy McDannelMartha McDonoughKevin McNultyEllen McPaddenDonald MelcolmBarbara MellendorfCarol MeltonMichelle & Michael MenardHarold & Beverly MihalMohammad MirzaJane MonellJames & MaryJo MontalbanoClaire & Jerry MontgomeryBryan & Margaret MorganPaul & Jackie MorganDanny MorrisJack & Kim MorrisKelly MourerMina MulveyRae Gene MungioliDavid & Elaine NelsonEldora & Howard NiedermillerBetty NielsenHope NohejlMichael & Marti O'BrienJecksan & Yolanda OjedaJean OlearyDorothy PalascakHugh Anne PayneLaura Mae PeregordPhillip PerroneLinda PostCandace PowellCynthia PowellHarold & Elvia PrangeAnn RanfranzRuthe ReillyKimberly ReynoldsMichael ReynoldsLois RieckJ. & B.L. RieseRuben & Brenda RodriguezHarry RoenerWhitney RomanMaria RosadoJoy RoswellHeather RueggSheldon SaidmanDiana SaizCynthia SalamancaMarilee SauerKathleen & John SchivalWalter Schur, M.D.Criss ScruggsBarry ScurranLizzie SensenigEric & Carrington SeversonStephen & Lisa ShainKelli & Samuel SharpeJerry SimsEugene & Alethea SingleCheryl SmithDennis SmithRonald & Deborah SmithRonald G. Snell, Jr.Frances Stanford

Kathie & Mark SteinagelJames & Cheryl SteinerNancy StephensChase SternSteve & Cathy StroudBeth SzelaLisa TafollaJeffrey TaylorDoris & Ralph TeneyckThomas ThatcherRichard & Lori UrsoGary UttkeEdgard & Joan VallarKay VanCleave, PhDSusie VizvaryDennis & Amy WaildKiki WaltersLawrence & Ellen WardKaren WaringRobert WhiteJoanie WiinbladEva & Steven WillmsJ.B. & Cynthia WillsStephen WrightCasey WyseRichard & Margaret YoungSusan & Lamar YoungEmily YoungbloodJoseph & Rosalia WilkesJean ZabadyMyrna & Ronald ZacccagninoDonald & Anna ZaengleDave ZuckerMichael Zukowski

CCA Friends($100 +)

Amye M. AdkinsDianne AltunaAnonymousCarol AnthonyLemmu & Sallie AustinPolly & Mark BartonMildred BonneauPhyllis & Jerame BreedenDebra BreslowMark BronsonMichael BudishWilliam & Ann BurginGary & Anita BurtLily BurtonBeverly & Jim ButeraDan & Kelly ButlerJohn & Jayne ByrnesAntonina & Giana CarpenterLarry CarpenterHarold & Gail CohenArlene CoudareDiana & Brian CritesAngela CroninClaire & Timothy CullenSteve DaignaultCheryl & Gregory Davis (group)Grace & Gary DeilyDavid & Patricia DeLongLouis C. Difabio IITim B. Elkins, Sr.Mike & Maria EstradaR.C. & Patrick EnunwaonyeJess & Alice EvansJarret FinoFrancis FisherJohn & Carrie FollettD. R. FunnellPhil & Lynn GaddFred & Estelle GagliardiGeoffrey GarinErick Gorecki

*Listed are all monetary donations for 2009. We are extremely grateful for these and all other fees,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.

CFC (Combined Federal Campaign, federal-employee giving)

donors, january 1 – december 31, 2009*Rob GoreckiWilliam & Nancy GormanDr. & Mrs.William GreenErin GreerJan GreesonMaurice GutzlerBob & Paula GuzzoIngrid HaaijerSarah HallJackie Halpin-OsteenLinda HanesMarie HansonJohn & Theresa HattonJohn J. & Arleen HeirtyJesse & Elizabeth HernandezDaniel & Angela HerstineS. Gaylann HicksCarolyn & Douglas HopkinsonCorey & Andrea HorschKathy J. HubbardHugh & Joanne JarvisHolly M. JenkinsCarol & Russell JennaMargaret JennaJoel JewellElizabeth W. JonesLouise Corrigan JordanJonathan & Deborah KantorShelly & David KatzRichard KinasMarilyn KnueveAnnette KolodnyEsther KriegerRoger & Carolyn LambBeverly & Jack LandersSylvia & C.K. LawsonDr. Vincent & Susan LongobardoJessica LooneyJames MacaulaySandy & Duncan MacKenzieJanis & Doug MacutJane MartinDeborah MecklenburgNelson & Yvonne MojicaLaurie MonierKimberly Ann MonizRobert & Ann MontgomeryJames MorrisElizabeth MoultonJanell NelsonPaul NiebrueggeRobert NordnessEmerson NorthMarlene O'DonnelAnn & Brad OrcuttRama Oskouian DMDSteven L. PageRobert & Ottie PaslayAnn Patterson & Howard LangnerGreg PattersonMargaret Patterson estateJimmie & Gina PavluJana & Hugh PeacePreston & Martha PeakWilliam PeckPaul PokladnikCarol PorterMarie QuarantaTodd RademacherAnnie & Tommy ReevesMary ReifBill & Donna RinehartChris RienerMark & Tina RiepeAndrea Richard, D.O.Jere RobertsonJessica RocheJohn & Catherine RomeroEric RonczkaJoanne M. Roosevelt

18

Elizabeth SalterThomas SauerRandolph SchaeferPaul SchmidtBarry ScurranRose & Fred SeitzPat & Robin ShannonJeffrey & Patricia SharpeRobert SharrettMark & Diana SheaLynne ShortTaryn SkeesErin & Crispin StephensJane StickneyChristopher StokesWilliam & Nancy SuwalskiStacy & Mitch SwihartGail & Arthur ThomsonArlon TietzNeva TomlinsonKevin & Jennifer TrapaniDeclan & Paul TremblaySally A. TrimplerMary & Truman Terrell, IIITammy VanNessKaren VanSchalkDavid VissConnie VegelgesangJanis Buzzbee WaltonJon WellesLarry WhitlerBarbara WiedenmanMyrna & Ronald Zaccagnino

CCA Extended Family($500 +)

Mario AdamoAnonymousMartha & James BrownJoe CherryRoger S. Chin DDS, PSNeil & Lori CitroneDiana CritchlawJill GoreckiTate & April GormanPaul & Fran LeatherwoodMary LytleSusan MartinElena MeliusMitchell FamilyVirginia MooresRobert PottsChase Stehr

CCA Sponsor($1,000 +)

AnonymousMichael CarrGeorge & Kristine DaleJeffrey Fearon, MDFred & Judi FreemanJames LefrakJohn & Sheryl PaulCharlene & John SmithCourtney VincentKenneth Wilson

CCA Benefactor($5,000 +)

Cash & April LevyGreg LuetkemeyerBill Mecklenburg & Christine Condino

Mecklenburg

CCA Guardian($10,000 +)

John & Patricia Dyer

CCA Legacy Society

Hazeldeane Pritchard Bequest

Memorials /In-Honor GiftsAmye M. Adkins, in honor of CherRonald & Lori Angel, in memory of John

HaycraftAnonymous, in memory of Rick DornierAnonymous, in honor of John GormanAnonymous, in honor of Annie Reeves'

birthdayAnonymous, in memory of Ellery Everett

WalkerLemmu & Sallie Austin, in memory of Ellery

WalkerBad Girls Book Club of Austin, in memory

of Margaret Ann Ekas PattersonYolanda Baker, Austin, TX, in honor of

Henry JohnsonThomas & Candace Barton, in memory of

Mark WarrenDave Bhavna, in memory of John HaycraftKevin & Julie Bonahoom, in memory of

Margaret PattersonCarolyn Bonfanti, in memory of Rick

DornierDeborah Breslow, in honor of Mrs. Alice

Kintisch, Edith Katzourin, Rabbi ElyseFrishman, Cantor Leon Sher, thanks for

helping withRobbie’s Bar Mitzvah preparationSharon & Thomas Brown, in memory of

Pauline BurzioBrookhall School Staff in name of Janice

StegmannEdward Brooks, in memory of Ellery WalkerChristian Callens, in memory of Sidney

GoldmanLarry Carpenter, in honor of Cher’s birthdayLarry Carpenter, in honor of Cher at

ChristmasRichie Cook & Adam Golden in honor of

Annie Reeves' birthdayRex Coppock, in memory of Ellery WalkerTheresa Bowling Croughen, in honor of

Annie Reeves' birthdayJeff Crowe, in memory of John HaycraftSteve Daignault, in memory of Ellery

WalkerRuth & Gerald Dankelson, in memory of

Emerson KellerDanze & Blood Architects, in memory of

Margaret PattersonGary & Grace Deily, in honor of Jeremy

DaleJudy Donaldson, in memory of Talin Robert

ShawDorroh & Kendrick, in memory of Charles

Mark WarrenKathleen M. Dunn in memory of Bill DunnM.L. & Ann Ekas, in memory of Margaret

Ekas PattersonTim B. Elkins, Sr., in memory of Rick Dornier

Hope Estrada, in honor of Annie Reeves'birthday

Jeffrey Fearon, MD, in honor of hiscolleagues

Eric Forseter, in memory of Ellery EverettWalker

Patrick & Delores Fox, given in the name ofJeff &

Emily Stiers on their wedding day, in honorof Avery Lytle

Fred & Judi Freeman, in honor of MichaelEsser’s college graduation

Friends of Freddie donations, in honor of Fr.Tim O’Neil

Phil & Lynn Gadd, in memory of ElleryWalker

Fred & Estelle Gagliardi, in honor of Rick &Janet Gagliardi at Christmas

Linda Gaida, in memory of Ellery WalkerJeremy Gaige, in memory of Ellery WalkerGeoffrey Garin, in memory of Lili SmithL. Goodwin, in memory of Ellery WalkerSylvia Gonzales, in memory of Ellery WalkerErick Gorecki, in memory of Margaret

PattersonRob Gorecki, in memory of Johnny PagRob Gorecki, in memory of Margaret

PattersonJill Gorecki, in honor of Mike EsserWilliam & Nancy Gorman, in honor of John

GormanErin Greer, in memory of John HaycraftJan Greeson, in memory of John HaycraftJacki Halpin-Osteen, in honor of John

GormanMarie Hanson, in memory of John HaycraftSandra & Paul Hardy, in memory of Rick

DornierJim & Arleen Heirty, in memory of Grace

AdamsJim & Arleen Heirty, in memory of Kathy

ConourJim & Arleen Heirty, in memory of Bill

HayesJim & Arleen Heirty, in memory of Rosalee

GrantJim & Arleen Heirty, in memory of Augusta

IacovettaJim & Arleen Heirty, in memory of Robert

KornJim & Arleen Heirty, in honor of The LevinsJim & Arleen Heiry, in memory of Vicki

OlejinikJim & Arleen Heirty, in memory of Lester

PritchardJim & Arleen Heirty, in memory of Dorthea

SaetherJim & Arleen Heirty, in memory of T.

ScotkovskyJim & Arleen Heirty, in memory of Evelyn

SlomaJim & Arleen Heirty, in memory of Mary

SmithJim & Arleen Heirty, in memory of Bob

WatierAmparo G. Hernandez, in memory of Ellery

Everett WalkerJesse & Elizabeth Hernandez, in memory of

Ellery WalkerMargaret & Michael Hogan, in honor of

Bridget IeronimoAshley Holbrook, in honor of John GormanCarolyn & Doug Hopkinson, in honor of

Duncan Hopkinson’s birthdayCorey & Andrea Horsch, in memory of John

HaycraftMeggan Jamison, in memory of John

HaycraftJoel Jewell, in memory of John HaycraftMargaret Jenna, in memory of Maxine

ReedDoug & Kirsten Jumper, in memory of

Margaret Patterson

David & Shelly Katz, in memory of ElleryWalker

Linda & Rudy Kessman, in honor ofNatasha Urban

Susanne Laird, in memory of Ellery WalkerBeverly & Jack Landry, in memory of

Margaret PattersonTom & Barbara Lawhon, in memory of

Ellery WalkerW. David & Rhonda Leonard, in honor of

Casey DeakinsSylvia & John Loving, in honor of Ryan

HollidayAnn Lucas, in honor of Brody Lucas from

grandparentsAnn Lucas, in honor of Don Lucas for

Father’s DayDon & Ann Lucas, in honor of Ann’s

BirthdayAnn Lucas, in honor of Don’s BirthdayEmily & Jon Lukowski, in memory of John

HaycraftDoris Capps Mabry, in memory of Margaret

PattersonJanis & Doug Macut Family, in honor of Dr.

Sava & Dottie Macut at ChristmasSusan Martin, in memory of Ellery WalkerKelly McDade, in honor of Annie Reeves'

birthdayDebbie & Patrick McDaniel, in memory of

John HaycraftKileen McDonald, in honor of Natalie

WardlawEllen McPadden, in honor of Jeremy DaleDonna & James Mertes, to Friends of

Freddie, in honor of Fr. Tim O’NeilLaurie Monier, in honor of Jeremy DaleJim & Maryjo Montalbano, in honor of their

daughter, Jennifer’s 34rd birthdayBob & Ann Montgomery, in memory of

Margaret PattersonClaire & Jerry Montgomery, in memory of

Rick DornierKelly Mourer, in honor of Reese MourerEldora & Howard Niedermiller, in memory

of James Reese BruceEldora & Howard Niedermiller, in memory

of James BundEldora & Howard Niedermiller, in memory

of Ida SchneiderBetty Nielsen, in honor of 50th Anniversary

of Ruth & Jerry DankelsonMarlene O'Donnel, in honor of Mallory's

weddingJean Oleary, in memory of Sidney GoldmanJohnny Pag, in honor of Robbie GoreckiGreg & Jill Patterson, in memory of Rick

DornierGreg & Jill Patterson, in memory of Johnny

PagGreg & Jill Patterson, in memory of

Margaret PattersonMargaret Patterson family, in memory of

Mack HamiltonJimmie & Gina Pavlu, in memory of Ellery

WalkerJana Peace, in memory of Margaret

PattersonGloria Pike, in honor of Aidan SkeesCarol Porter, in honor of Sydney Rose FordLinda Post, in memory of Margaret

PattersonRobert Potts, in honor of John GormanHarold & Elvia Prange, in memory of

Carolyn MuseMary & Megan Reif, in honor of JoAnn

Kopshinsky & Robbie GoreckiLois Rieck, in memory of Ellery WalkerBill & Donna Rinehart, in memory of

Margaret PattersonJere Robertson, in honor of Jane Monell for

her birthdayMerilee Sauer, in honor of Rick DornierBarbara Schuster, in honor of Jeremy Dale

Criss Scruggs, in memory of Ellery WalkerFred & Rose Seitz, in honor of all CCA kidsFred & Rose Seitz, in honor of Freddie SeitzStephen & Lila Shain, in memory of Talin

Robert ShawJeffrey & Patricia Sharpe, in honor of Rick

DornierMark & Diana Shea, in honor of Brielle

SheaLynne Short, in memory John HaycraftTaryn Skees, in honor of John GormanCharlene Smith, in memory of Rick DornierCharlene Smith, in memory of Johnny PagCharlene Smith, in memory of Margaret

PattersonCharlene Smith, in honor of Annie Reeves'

birthdayCharlene & John Smith, in honor of the

birth of Reid SmithWilliam & Nancy Suwalski, in memory of

Victoria SuwalskiLisa Tafolla, in memory of Ellery Everett

WalkerTeam Margaret, in honor of Margaret

PattersonDoris & Ralph Teneyck, in honor of Tamara

MantloNeva Tomlinson, in memory of John

HaycraftNeva Tomlinson, in memory of Jim WeaverNeva Tomlinson, in memory of David

WilliamsMary & Truman Terrell III, in honor of Justin

PrinceTimber Ridge Elementary School Collection

in honor of Cale MorrisKaren VanSchalk, in honor of her weddingConnie Vegelgesang, in memory of John

HaycraftAlicia Vitarelli, in honor of Ava BeelerDennis & Amy Waild, in memory of Rick

DornierJanis Buzzbee Walton, in honor of Rick

DornierLawrence & Ellen Ward, in memory of

Margaret PattersonKaren Waring, in honor of Megan CroninWesley Healthcare employees of Fran

Cronin, in her honor at ChristmasBarbara Wiedenman, in memory of Jennifer

WalkerMary Wilcox, in the name of Sarah WilcoxJoseph & Rosalia Wilkes, in memory of

Sidney GoldmanJ.B. & Cynthia Wills, in honor of Reed WillsEmily Youngblood, in honor of John

GormanDave Zucker, in memory of Ellery WalkerMichael Zukowski, in memory of Ellery

Walker

Jilly Bean Bunch(Donations to provide Financial

Assistance to Families)

Sponsors of Jylian's Links of Love GolfEvent

Richard Urso

Corporate /Foundation Gifts

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

AT&T (Employee Giving)American Express (Employee Giving)American Express Charitable Fund

(Matched Gifts of Janell Nelson)

AnonymousAptus Partners, LP (John Romero)Attachemate/NetIQ (Matched gifts of

employees)Baby Hands Down by Erin ScottBaker Roofing CompanyBank of America (United Way Campaign

Employee Giving)Charity Motors (CARS-Charitable Auto

ResourceS)Children’s Medical Charities (CFC)Cleveland Bakers Local No. 19Creative Growth Counseling & Coaching,

Inc.Danze & Blood ArchitectsDFWBIDDominion Foundation (matched gift of

John Charles Larson)Dorroh & KendrickDeutsche Bank Americas Foundation

(Matched Gift of Kent Penwell)Epic Systems, Inc.Five Star Quality Care, Inc. (recommended

by Robert Sharrett)Frugal Flower, Inc. (purchases percentage)Funding Factory (Ink/cell recycle rebates)GoodSearch/GoodShopHome Depot (Matched Gifts of Doug

Hopkinson)JackTheDonkey.com by David KatzJefferson Lumber and Millwork by Mary

LytleJohnny Pag CreationsJustgive (donors listed separately)Katie's Clothes Bin (by John & Laurie

Bovenkamp family)Katsafouros BequestLegacy Global Foundation directed by the

Mitchell familyA grant from Kraft Foods Global, Inc.Kroger (purchases percentage incentives)Neal Oral & Maxillofacial Surgery, PLLCNetwork for Good (donors listed

separately)One Cause (purchases incentives)PASCO (Personal Assistance Services of

Colorado)Pfizer (United Way Campaign Employee

Giving)Prudential Foundation (Employee/Matching

Gifts)Prudential Foundation (Matched Gift of

Diana Critchlaw)Random House, Inc. (Matched Gift of

Heather Miller)Redwoods Group (Matched Gift of Bill

Mecklenburg)Safeway, Inc. (purchases percentage

incentives)Saidman & Associates, Inc.Sarah Hall Productions by Sarah HallSchoolpop, now One Cause (online

purchases percentage program)Steam Clean Pressure Wash by Todd

RademacherSchwab Charitable Fund (Donor Advised)A grant from Starlight Foundation, Inc.A grant from Tektronix Foundation (Larry

Bolton)Truist for Qwest (Employee Giving)United Way of California,Capital Region

(Donor-Directed Donations)United Way of Central Maryland (Donor-

Directed Donations)United Way of Greater Milwaukee (Donor-

Directed Donations)United Way, Heart of Illinois (Donor-

Directed Donations)United Way Mile High (Donor-Directed

Donations)United Way New York (Donor-Directed

Donations)United Way of Southeastern Pennsylvania

(Donor-Directed Donations)

United Way of Southern Tier-Corning, NY(Donor-Directed Donations)

United Way of Tucson and SouthernArizona (Donor-Directed Donations)

WJH InvestmentsWesley Healthcare (employees of Fran

Cronin)Wellpoint Foundation Funds Management

(Employee Giving)Wellpoint Foundation (Matched Gifts)Wells Fargo (Employee Giving)

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

Association Works by John & Sheryl PaulA grant from the Chatlos FoundationA grant from Lifetime Fitness FoundationA grant from the Perot FoundationThe Redwoods Group (Matched Gift of Bill

Mecklenburg)Starbucks Coffee CompanyVivo Brothers, Inc.

CCA Corporate /Foundation Partners($5,000-$10,000)

A grant from the Max & Victoria DreyfusFoundation

A grant from the Jorge Posada FoundationA grant from May & Stanley Smith

Charitable TrustTriangle Foundation (Donor-Advised

Grants)A grant from Martin Woodall Foundation,

Inc.

CCA Corporate /Foundation Partners($10,000 or more)

Cher Charitable Foundation

FundraisingEvents

Up to $1,000Alcan Cable Denim Day for CCA / ARA

(Alcan Recreation Association,Employee Group)

Aptus Partners LPBaltimore Marathon / Firstgiving Page /

Pamela Mishra, CCA SupporterBrookhall School Staff Collection in name

of Janice StegmannCarnival of Caring / Avery Lytle, CCA kidCash Can / Freeman Insurance, CCA

SupporterCash Can / Kim Rogers, CCA VolunteerJanis Cazare’s Firstgiving PageCharity Big Top Show / Erica Mossholder,

CCA VolunteerHopkinson Family, Donation through

Awareness EffortInk / Cell Recycle for CCA / CCA Families &

FriendsJewelry Sale / Peggy McDannelJewelry Sale / Robyn JohnstonLittle Fire, Big Hearts Dinner Auction for

CCA / Taryn Skees, CCA VolunteerTamara Mantlo’s Firstgiving PageJana Peace Email Fund Appeal

financial assistance

do you travel to receive qualitymedical care? If you do, and

need financial help, CCA has afinancial assistance program that willhelp with food, travel and/or lodging.Call CCA for an application at800.535.3643. All we ask is that youapply at least four to six weeksprior to your next appointment.

Makena at 3 years old

Christmas 2009

“

”

cCA is such a wonderful organization!

Their willingness to help financially

decreases the strain for our family. We travel

to Mayo Clinic in Rochester, Minnesota for

our daughter's facial palsy appointments.

Since Rochester is eight hours away from our

home, it is time consuming, and can take a

toll on your finances as well. CCA’s assistance

is very much appreciated! The compassion,

caring and professional manner that the

organization’s [employees] display are positive

attributes! Keep up the great work!

Brad, Antoinette, Makena and Kaden Heier

Steele, North Dakota

testimonial

19

Orland Park Village Denim Day / in honorof Kate Rogers, CCA kid

Pampered Chef / Jessica Dornier / BobbyMayo, in honor of Rick Dornier

Penny Drive / Angela Marcum / LincolnHeights Elementary

Permission Men’s Skin Care LinePetroCasa Energy Chili CookoffSolis Women's Health Holiday CollectionTimber Ridge Elementary School Collection

in honor of Cale MorrisHannah Steinagel’s Firstgiving Page /

Kathie Steinagel, CCA VolunteerSammi Wayne’s Lemonade Sale for CCA /

Samantha & Jennifer WayneSnowman Auction / Barbers Hill ISD Gifted

& Talented classes / Tracy Tidwell,organizer in honor of Wade White

$1,000-$5,000Be Brody’s Angel / Jennifer Lucas & Family,

CCA VolunteersCCA Family Retreat Chance RaffleCher Convention / KimWerdman, Judy

Didelot, CoordinatorsFamily Fun Stimulus Package Raffle /

Matthew Abernathy, CCA Volunteerw/Jana Peace

Friends of Freddie Firstgiving Page / RoseSeitz, CCA Volunteer

Jaci’s Country Dance Bash / JaciSamhammer, CCA Volunteer

Johnny Pag Motorcycle RaffleDawn Page Firstgiving PageSmiling Through The Mask Dinner /

Wendelyn Osborne, CCA VolunteerStarbucks Community Clean-Up / Emily

Tipton, Organizer w/Jana Peace, CCAVolunteer

Tamale Sale / Booz Allen Hamilton,Houston & Aldine Church LadiesGroup- Abigail De Los Reyes, Organizerin honor of Natalie Wardlaw

$5,000 or moreAlexa’s Appeal for CCA / Denise Rast, CCA

VolunteerLily’s Dinner for CCA / Tosha Walker, CCA

VolunteerRyan’s Road / Gulich Family; Nicole, Ryan,

Ryan Jr., Lauren, MadalynnSeth’s Stride / Swihart Family; Stacy, Mitch,

Seth, Gabe, Sydney

$10,000 or moreJylian’s Links of Love Golf Tournament /

CCA & Bilbow Family; Kendall, John,Jylian, Mikey, Ivy

Wendelyn’s Course of Dreams GolfTournament / Wendelyn Osborne, CCAVolunteer

$20,000 or moreChocolate Festival / Rick Chiavari /

Aventura MallFriends of Jeremy Golf Tournament / Dale

Family; Kristine, George, Jeremy, Tommy,Cody

Henry’s March / Johnson Family; Rachel, TJ,Lauren, Henry

Heroes 4 Hope Gala / Jorge PosadaFoundation / beneficiary, CCA

Honorary Chairperson:Cher

Board of Directors:George Dale, CHAIR, Corning, NYKurt Allen, JD, CPA, CFP, WMA,Canfield, OH

Tony Davis, DMD, Tuscaloosa, ALDonna Gossett, Cullman, ALPaula Guzzo, Evansville, INBill Mecklenburg, Morrisville, NCErica Mossholder, Tuscaloosa, ALRose Seitz, Youngstown, OHRobin 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 Patterson

Administrative Coordinator:Jana Peace

VOICE 214.570.9099FAX 214.570.8811TOLL-FREE 800.535.3643URL CCAkids.com or CCAkids.org

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

If you no longer wish to receive thisnewsletter, please email your wishes toAReeves@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.

for several years now, Lisa Vernon hasbeen a volunteer, cheerfully donating

her time and expertise to Children'sCraniofacial Association. Lisa is a graphicsdesigner with her own firm, VernonCreative, and has collaborated on manyprojects for CCA, both in design andmarketing. She may be best known at CCAfor designing our Craniofacial AcceptanceMonth poster and she helped withmarketing to launch the effort over fiveyears ago. The design is used each yearand also graces CCA's “hangers,” cardswhich families distribute during the monthof September to spread awareness that“Beyond the Face is a Heart” and to foster“widening the circle of acceptance.”

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

Currently, Lisa does the graphics work forour fund appeal packages. These are themailings that arrive between newsletters inspring for our Retreat Fund Appeal and infall for our Annual Year-End Campaign,asking folks to donate. This is no small taskand she works with us from beginning toend, transforming a story, photos and arequest letter into an attractive and effectivepackage which inspires the giving thatsupports CCA's programs and services.

Thanks Lisa, for all you do. Three cheersfrom all of us at CCA!

NONPROFIT ORGU.S. POSTAGE

PAIDRICHARDSON, TXPERMIT NO. 128

children’s craniofacial association13140 Coit Road, Suite 517 • Dallas, TX 75240