messagefrom thechairman

there are many differentpeople who will read

this issue of the CCAnewsletter. You may be anindividual or familymember affected by acraniofacial condition. Youmay be someone whopurchased a raffle ticket fora chance to win amotorcycle. You may be amedical professional whoworks with craniofacialpatients. You may besomeone who hassupported CCA by hostinga fundraiser, or you mayhave attended one of thesefundraisers. You may besomeone who has donatedto CCA. You may be a

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

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

see chairman, page 9

the day “Graci Girl” was born was the happiest day ofmy life. We found out early in pregnancy that Graci

would be born with a cleft lip. The news was sodevastating, and the hurt I felt that day will never beforgotten. But praying to God helped me come to realizethat Graci was put in my life for a reason. I knew in myheart that I had a job to do and that was to be the bestmother I could and to raise her to be strong anddetermined, so she could overcome the obstacles that shemay face.

The day came, and Graci was ready to enter into thisworld. I had prepared myself for the worst becauseresearch showed that most babies are born with cleftpalates as well. Graci was just as beautiful as I hadexpected. However, there were other issues — Graci was

see graci, page 10

insidecca kidjack simmons. . . . . . . . . . . 2

cca adulterica crabtree mossholder . 3

cca supersibsnick, parker & emmasimmons . . . . . . . . . . . . . . 4

calendar of events . . . . . . . 5

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

cca bracelets for sale . . . . . 5

henry’s march . . . . . . . . . . 6

goodsearch & goodshop . . 7

good news . . . . . . . . . . . . 8

torey’s distraction. . . . . . . . 9

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

cca programs . . . . . . . . . 11

testimonial . . . . . . . . . . . 12

financial assistance . . . . . 12

fundraising news. . . . . . . 13

free 2011 hotel stay . . . . 14

donor list . . . . . . . . . . . . 15

donors in the spotlight . . 16

graci’s journeyBy Mary Brown

ccanetwork

meet jack simmons

Jack loves to play “army

guys,” “dinosaurs” and

“Woody,” and he likes to

sing songs at school. And

Jack’s into the music his

brothers like — Muse and

anything ska.

When he grows up, Jack

wants to be a pirate. He

saw his mom in a spoof on

Pirates of the Caribbean

and now plans to be Jack

“Sprat.”

Jack’s first CCA retreat

was in Salt Lake City, but

he was just a baby and

doesn’t remember any of

it. His family, however, had

a great time. Recently, he

and his family went to the

retreat at Myrtle Beach and

had a ball. He said it was

fun to go to the beach and

play with Wade and his

family. He misses them and

looks forward to seeing

them again at another

retreat.

So far, Jack has had eight

surgeries. He was so little,

he doesn’t recall them. He

recently started wearing

the reverse head gear to

bed. He calls it his mask,

and he thinks he is pretty

cool wearing it. His next

planned surgery will be the

bone graft for his gumline.

His family hopes and prays

every day his shunt will

keep working.

Here are some wise

words of advice from Jack

for any other kids going

through similar situations:

“Bring your favorite toy

when you go to the

hospital. And your mom.”

Well said, Jack!

jack Simmons is a four-

year-old preschooler

from Salt Lake City, Utah.

He has a sister Emma, who

is 7, and two brothers,

Parker, who is 12, and Nick,

who is 14. He adores his

siblings, and they love him

so much. (Read all about

Emma, Parker and Nick on

page 4.)

Jack also has a black kitty

named Onyx. “We got her

for Easter last year,” he said.

“She is so soft. I love her.”

Jack really loves watching

movies. Some of his

favorites are Toy Story,

Barbie and The Three

Musketeers and Jurassic

Park. He likes to watch

“Go Diego Go!” and

“Minute to Win it.”

2

ccakid

3

am slowly losing range ofmotion in my jaw (the abilityto open my mouth). I alwayslaugh when I go to thedoctor or dentist becausethey exclaim, “How do youeat?!” I simply reply, “Does itlook like I’ve missed manymeals?” Laughing helps metake things in stride, and myhusband is always makingjokes with the doctors I visit.

For me, the most importantthing about being a part ofCCA is knowing, no matterwhat you look like, that youbelong. Growing up, I lookeddifferent from everyone else.Many surgeries later, mostpeople do not comment onthe “bump” in my lip or mychin. In fact, even I barelynotice it anymore! But when Iwas growing up, it was adifferent story. Every day itseemed like someone wouldask what was wrong with meor call me names like “BigChin.” I think the hardestpart of my life was when Istarted wearing make-up. Iwanted to wear it, becauseall my friends were swappingcolors and trading tips, butwhen I looked in the mirror, Ithought, “What’s the point?”

Thankfully, I am at a greatplace in my life now. It tookme until college to finallylove myself, but when Imoved away and went tosuch a big place, I noticedthat everyone hadsomething they wereuncomfortable with. A lotof people looked differently,but they were succeeding inacademics, art, sports andstudent life. I felt as if Iwas just another face inthe crowd and what I didmade me stand out, notwhat I looked like. It wasamazing to realize thatthere were so manydifferent kinds of people inthe world, and for the firsttime in my life I wasmeeting dozens of newpeople every week and veryfew of them evermentioned my looks —unless it was a compliment!

Now, I am all “grownup.” I am married to awonderful man who is kind,compassionate and just asquirky as I am. I love being apart of CCA, too. We areexcited that we will beattending the retreat thisyear in Boston. I cannot waitto meet you all there!

meet erica crabtreemossholder

ccaadulthi! My name is Erica

Crabtree Mossholder,and I serve on the board ofCCA as the secretary. Iheard about CCA a fewyears ago from a goodfriend, Tony Davis, who isalso on the board. I wouldhave loved to be a part ofCCA as a kid, and I am soexcited to get involved withthem as a “grown-up.”

I have several types oftumors — osteomas,neuromas and other growthsthat are all on the right sideof my face and head. Mymom noticed these when Iwas about 2 years old andstarting to brush my teeth onmy own. I would pull out“bumps” from my jaw andlip and tongue and tell herthey were in the way. As withall of my tumors, we wouldhave them removed andmore would grow back.

In second grade, we founda bony projection in my earcanal. To date, it’s only beenremoved twice because itgrows back so fast — bothtimes within a month, largerthan when it was removed.Since then, I have had severalother growths, but nothingtoo serious. I have beentested for many syndromes,but I have never beenformally diagnosed. Ourfamily vacations were alwaysto towns with great medicalcenters. I did not mind thedoctor visits along the way,because we visited Michigan,Ohio, Georgia, Vanderbiltand so many other funplaces. Despite my mom’sdiligence, the doctors wouldjust say, “It’s the EricaCrabtree syndrome.”

After about sevenunsuccessful surgeries toremove the growths (someminor, some more involved),most of the doctors assumedthat when I finished growing,my bones and soft tissueswould settle down and stopover-growing. However, theyare seemingly doing theopposite! The biggest issue Ihave right now is my jawbone is growing rapidly and I

Nick loves being a BoyScout, and has been on morecampouts than anyone in histroop! He is currently workinghard on earning his EagleScout before his 16th birthday,because his mom said he can’tget his license until he earnshis Eagle! He is hoping to dosomething at PrimaryChildren’s Medical Center,since they have done so muchfor Jack.

Nick’s Grandma calls himJack’s “Knight in ShiningArmor.” He is a great bigbrother! He has always beenthere for Jack to protect him— and chase him around theyard!

parker is 12 and anxiouslyawaiting for hiselementary school days to

be over. He is a very wellrounded young man. He lovesbeing in musicals (he has beenin six!) and playing the bassguitar. He’s also an amazingsoccer player. He hopes to beable to do all those things inhigh school! But when will hesleep?

Parker is a self proclaimedgoofball and will tell youregularly, that he is“awesome” (which is fine,because he is!). He loves skamusic and was beyond excited

nick is 14 and currently afreshman at Murray High

School. He loves hanging outwith friends, and he reallylikes to eat! He thinks he’scool because he can eat aslice of pizza in two bites! Heis an avid gamer and canusually “beat” a game withinthe first week.

Jack always looks forward toNick coming home fromschool, so they can playAssassins Creed together.When Nick was little he wasobsessed with dinosaurs andToy Story, and he has nowpassed his love and knowledgeonto Jack. Nick’s newestpassion is astronomy. Hehopes to study it when hegoes to college.

to go to a Reel Big Fishconcert recently. Even thoughhe had to go straight from theplay he was in, still wearing his“dog” stage makeup, hedidn’t even care!

He is so much fun and lovesplaying army guys with Jackwhenever he can! Every timeJack goes to “the kid’sschool,” Parker and his friendsrun up and give him high fivesand fist bumps! Too bad theycan’t be CCA SuperFriends,because they all love him likehe was their own littlebrother!

emma is 7 and loves beingin first grade. She takes

ballet and tap lessons and is agreat singer. She adores beingonstage and has been in threeplays. Her favorite was“Beauty and the Beast” withher mom and Parker lastsummer. She loved getting tohang out with Belle everyday!Her claim to fame though isperforming on the same stagewhere Troy and Gabriellafilmed “High School Musical!”She is an amazing artist tooand is always drawing picturesto make people happy!

Emma loves giving hugs andtelling people she loves them.She is such a good big sister.She is always helping Jack withhis speech and how to saythings “right” and oftentranslates for her mom. Shewas also a great helper duringphysical therapy when Jackwas a baby. Emma loves itwhen Jack comes to her class,and Jack fits right in! He lovesto sit on the rug for story timeand go to lunch.

When Nick, Parker andEmma first heard Jack wasgoing to be special, they wereall really excited! They love himunconditionally. Just before hisfirst surgery to repair his lip,they kept asking if he couldnot have the surgery. Theyloved him just the way hewas! They have been to theCCA retreat in theirhometown of Salt Lake City aswell as the retreat in MyrtleBeach. They’re super duperexcited to be coming toBoston this summer! Allbecause Jack is their brother,they get to do so many funthings. They think he’s verycool!

ccasupersibsmeet thesimmons

4

5

cca mugshots

Peter and Jacob Dankelson enjoy cocoa in their CCA mugsafter playing outside on a snowy day last winter in Highland,Michigan.

“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 and twitter!

cCA now has its own facebook page andcause! You can look us up by simply

searching for Children’s CraniofacialAssociation!

follow us on twitter at twitter.com/ccakids ortwitter.com/ccateens.

calendar of eventsdate event contactJun 24, 2010 Craniofacial Symposium AReeves@ccakids.com

Hyatt 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 2010 3rd Annual Ryan’s Road ngulich@yahoo.comBig Flats, NY

Sep 9, 2010 Raegan’s Rally/Walk for CCA Ashley DaughertyDeerasic Park, 3 PM adaugherty@mvesc.k12.oh.usCambridge, OH

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

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

Sep 20, 2010 Jylian’s Links of Love JPatterson@ccakids.comGolf Tournament www.ccakids.orgThe Golf Club at The Resort on 800.535.3643Eagle MountainFort Worth, TX

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

henry’s March 2010was an incredible

success. As they say, “Thirdtime’s the charm!” Whilewe were planning the thirdannual event, we feltmomentum build as morethan 300 runners pre-registered for the races.

Our participants enjoyeda day of exhibitors, music,face painting, medals,T-shirts, goody bags andbreakfast. Race day waswarm and sunny withtemps reaching nearly 70degrees! Henry’s March hastruly grown beyond ourinitial expectations, and wewere so proud of ourturnout this year. Nearly2,000 people attended,and the crowd was sopositive and upbeat.

The 5k was exciting withabout 200 runners andwalkers on the route. Thefirst place overall malewinner was Luis Roquewith a time of 19:4. Ouroverall female winner inthe 5k was StephanieMorris with a time of20:36!

Of course, our MascotRace was a hit with thekids as we had about 10area mascots participate.Another highlight was afun new feature we addedto the 1 mile race called“The Great Waiter Chase,”presented by Angelini’sItalian Restaurant. A“waiter” (good friend andlocal track coach, JosePerez) had a pizza-shapedflag attached to his waiteruniform. He had a two-minute head start, and thefirst runner to capture theflag earned free pizza fora year from Angelini’s. Thewinner was Mike Boyer,who also took the firstplace medal in the 1 milewith a time of 5:15. Ourfirst place female in the 1

mile was AlexandraGuerro-Macchiawith a time of 6:04!

Angelini’s alsosponsored a pre-racecarb load spaghettidinner on March 6,which netted $750— now that’s amoré

for CCA kids! Thank you,Angelini’s!

The Kids Dash is alwaysfun and Henry’s favoritepart of the day. Beautifulmedals were donated byTurlock Livestock AuctionYard for all children in theKids Dash. They felt likeOlympic champions!

Each year our communityand local businesses goabove and beyond tocontribute to our cause.We’d like to especiallythank and acknowledgeFoster Farms, CaliforniaState UniversityStanislaus, Reed Realty,Memorial Medical

Center, The ModestoBee, Rush Advertisingand Gallo Winery for theircontinued support ofHenry’s March for CCA.We’d also like to thank our100-plus volunteers anddedicated committee.

We are proud to sharethat we raised more than$21,000, bringing ourthree-year total to over$70,000 for CCA! Puttingon the race is a lot of hardwork, but giving to CCA isso rewarding! We can’twait until next year.

6

henry’s marchTJ, Rachel, Laurynn and Henry Johnson

Photography by www.bicekphotography.com

fundraising news

7

last December, CCA held a drawing for a Johnny PagMotorcycles ProStreet and Tucker Woods of Lindon,

UT, our lucky winner, chose the black edition of the bike.Tucker purchased his raffle tickets at “Lily’s Dinner” lastOctober. Special thanks toJohnny Pag.Congratulations Tucker!

motorcycle raffle winner!

www.johnnypag.com

cca 20th anniversaryt-shirts

our limited edition20th Anniversary

Logo T-shirts are stillavailable for purchase,now on sale for just $15each, plus shipping.

We still have thefollowing sizes available:Adult sizes, S, M, 2XL,and 3XL. And we’re happy to announce youth sizesare 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 & goodshopEvery time you shop online at your favoritestores you could be saving money and earning adonation for Children’s Craniofacial Association.

our new toolbar, developed by GoodSearch &GoodShop, takes just a few seconds to download.

More than 1,300 top stores including Apple, Best Buy,Gap, PetSmart, and Staples are pitching in and willdonate a percentage of each sale to our organization.There’s no extra cost to you and you may even save moneyas the merchants are providing us thousands of money-saving coupons!

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

(Firefox seems to be the easiest browser to use.)

Giving Back

cCA is proud of a new cause-related marketing alliancewith Permission products, a new line of men’s skin

care, just introduced.“Permission formulas help you face the world with new

confidence, and you’ll be helping others do the same. Aportion of proceeds from each product go to benefitChildren’s Craniofacial Association…”

www.permissionskincare.com

Motorcycle winner, Tucker Woods, with Lily Walker

laurynn Johnson, big sister to Henry (see Henry’sMarch, page 6), of Turlock, CA, was among a select few

invited to try out for the “Brainsurge” game show at Nickstudios and just as we closed on this issue, she got wordshe was called back to tape the show! Congrats and goodluck Laurynn!

francis Smith passed the “ultimate” exam of hisgraduate school career—it was the qualifying exam in

which he gave an oral defense of his proposal for his PhDthesis project. They approved Francis’s proposal, so he isofficially a candidate for his PhD. Francis was told that thisis the biggest milestone in his career besides getting hisactual PhD. Francis hopes to complete his degree in 2012.

rob Gorecki (right) and older brother, Erick, (left) gotup close and personal with Mavs owner, Mark Cuban

when they were in Dallas for a game (and to visit mom,CCA Development Director, Jill Patterson). Wow!

8

good news!

cCA has a new Public Service Announcement. C.R.Conant and Liquid Logixx donated their expertise to

produce the 30-second spot. And on February 16 it hit thebig time. The PSA aired during America’s most popular TVshow, “American Idol.” CCA was immediately inundatedwith calls from families wanting to become a part of theorganization, individuals wanting to volunteer and donate,and folks just interested in learning more about CCA andthe families we serve.

This was not CCA’s first collaboration with FOX. In 2008CCA’s logo aired following an episode of “House” thatfeatured a patient with a facial difference.

A huge thanks to FOX for making it possible to spreadawareness to such a vast audience!

cca spreadsawareness onnational tv!

volunteer who hassupported CCA programs.You may be the parent of anewborn visiting your firstcraniofacial clinic in hopesof learning more about yourchild’s condition.

What do all of you have incommon? Without you,Children’s CraniofacialAssociation would not bebeginning its third decade ofservice to the craniofacialcommunity. You are all vitallyimportant to helping usachieve our mission.

You have attended a familyretreat and networked withother craniofacial families.You have provided medicalservices for craniofacialpatients or written articles orsyndrome booklets to helpeveryone learn more aboutcraniofacial conditions. Youhave raised or donatedmoney that has allowed CCAto develop, grow and deliverits important programs andservices. You helped to raiseawareness in yourcommunity duringCraniofacial AcceptanceMonth.

Because of you, in 2009CCA was able to connectwith thousands of newcraniofacial families. Thesefamilies may have attendedfamily retreats or networkedwith other families byphone, email, Facebook ormessage group. Theyattended holiday parties,read syndrome booklets orqualified for financialassistance for travel tocraniofacial centers for care.

Because of you, morethan 400 people attendedthe 2009 family retreat inGrapevine, TX. At thelargest retreat ever, manyCCA families learned theyare not alone in theirjourney as a familyimpacted by a craniofacialcondition.

Because of you, friendand family fundraisers areone of the largest sourcesof financial support forCCA, growing each year insize and in the number ofpeople who participate.

Because of you, a wholegeneration of CCA kidswhose families got involvedwith CCA 20 years ago havedeveloped into strong,confident young adults.

Because of you, my familyhas benefitted from theservices that CCA provides.In 2003, my family attendedits first family retreat andrealized for the first time thetremendous support networkthat CCA provides.

As CCA enters into itsthird decade of service andsupport to individualsaffected by craniofacialconditions, we want you toknow that we cannotachieve another 20 yearswithout you. You all havean important place in thefuture success of thisorganization. Thank you forall you have done for thisorganization and for all thatyou will do in the monthsand years ahead.

George DaleBoard Chairman

torey’s distraction

H E L P F U L T I P !

updated baby product recalls

avariety of baby products that have been recalled arespotlighted on this site (download the newsletter

online for an active link):http://www.parents.com/baby/safety/toy/gear-recalls/?sssdmh=dm17.435669&esrc=nwpmmdailytips031810&email=550050104.

README!

chairman, from page 1

torey’s Distraction, anaward-winning

documentary by TishaBlood, premiered in Dallason February 18th at theAngelika Film Center atMockingbird Station.

Torey’s Distraction tellsthe story of three childrenwith Apert syndrome-a raregenetic condition thatcauses craniofacialanomalies and skeletalmutation.

Filmed with love andhumor over ten years,filmmaker Tisha Bloodprovides an intimateglimpse into thetransforming powers ofscience, family, hope andcompassion.

CCA was honored to bea part of this very specialnight and looks forward toworking with this amazingteam in the future. Thankyou for everything!

9

Photo courtesy of Katherine Robertson Photography, katherinerobertsonphotography.com

journey watching a brave 6year old go through fourstages of earreconstruction. Graci’sbrother, Griffin, has beenbeside her all along theway. We have traveled toCalifornia to a well-knownplastic surgeon, who hasbeen constructing an earto look like Graci’s otherone. Graci sees her ear as agift, and she is ready for itto be complete.

We have faced manyobstacles through Graci’sjourney, especially dealingwith insurance andfinancial issues. However,through lots of fundraisingand generosity of thecommunity, family andfriends, Graci’s dreamshave come true. CCA isalways willing to helpfamilies, and we appreciate

their help with travel. Weare so thankful to the CCAangels and what they dofor families with facialdifferences.

Graci’s facial differencesdon’t seem to stop herfrom being an outgoing,outspoken child. She enjoysshopping with her mommy,painting her nails, craftswith her brother, dancing,cheerleading and spendingtime at the beach with herfamily. Graci is quite the“little princess,” and I amconvinced she will be MissAmerica one day. She is soconsumed with beautyboth in and out. She is soconfident with herself andloves helping others.

Graci has a long roadahead of her, and herjourney doesn’t end but her

diagnosedwithhemifacial

microsomia. She had a cleftlip, cleft palate, cleft in hereye, underdeveloped jawand absence of an ear(microtia).

Luckily, we had beenintroduced to a wonderfulcraniofacial center early inpregnancy, and they were sohelpful. Nevertheless, I stillfelt alone. Then I gotinvolved with Family SupportNetwork, Children’sCraniofacial Association,Smile Train and the CleftPalate Foundation, and Irealized I wasn’t alone.There were other familiesgoing through the exactsame thing.

Graci had her first surgeryto repair her cleft lip whenshe was four months old. It

was truly amazing to seethe work of moderntechnology. I have to admitI missed her crooked smileand her hole between hernose and lip. It wassomething that I hadgrown to love just over ashort period. At 14months, Graci had herpalate repaired and wasable to eat solid foods.

Currently, Graci is on herjourney for “An Ear forGraci.” It has been such aremarkable and amazing

10continued next page �

graci, from page 1

faith and courage continues.She will soon have nasalrevision, alveolar bone graftand jaw reconstruction.Later, as a teen, she willundergo a facialreconstruction, includingfat and bone grafts.

I know that we have

challenges to face as shegets older, but we willcontinue to keep herstrong and to inspire in hera sense of wellbeing. Mydream is that one day shewill give back to the world,and I hope her story willbring joy to others.

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 support

groups, please visit the links above or contact CCA’s

Program Director, Annie Reeves, AReeves@ccakids.com.

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 to lean on. For further assistance or information

call Annie Reeves at 800.535.3643 or email

AReeves@ccakids.com

programs we offer• Toll-free hotline• List of qualified

physicians• Information and support• Educational booklets• Financial assistance• CCA Network, a quarterly

newsletter

• www.ccakids.orgwebsite

• Annual Cher’s FamilyRetreats

• Public awareness• Family networking• Advocacy• Kids Klub• Yahoo support groups• Webinars

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

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 Klub

11

Karter Boxafter surgery

“

thank you, CCA! When we took mysecond child, Karter, to the pediatrician

for his four-week checkup, we had no ideawhat we would be facing in the next fewmonths. After the doctor examined Karter,we were sent immediately to the hospitalfor an X-ray, which confirmed his diagnosisof sagittal craniosynostosis.

Surgery was our only option. After daysof discussion and Internet research, wedecided that the best treatment for Karterwas a newer procedure, a less invasivesurgical option that would limit the level oftrauma and his time in the intensive careunit of the hospital. The only problem wasthat surgeon we chose was 600 milesaway at the St. Louis Children’s Hospital.

We were concerned about how wewould be able to pay for all of the traveland expense of getting Karter treated in St.

testimonialKarter Box before surgery

Louis, in addition to all of the medical bills,but we knew it was the best option for ourson. When we called the doctor to set upour first appointment, we were giveninformation about support groups andfinancial assistance. Of course CCA washighly recommended.

We called CCA and talked with AnnieReeves. Because of the support andfinancial assistance of Annie and CCA, wehave been able to get our son the care heneeded without having to worry abouthow we would be able to pay for all of ourtraveling!

Karter was 16 weeks old when he hadhis surgery. The outcome was incredible,and we were driving him home from St.Louis, Missouri, to Michigan just two daysafter! While the doctor was wonderful andwas able to recommend a facility where wecould get his helmets in Detroit, it was stillnecessary to return to St. Louis five times inthe last year for check-up appointments.Annie and CCA were there every time tohelp us with our traveling needs.

Thank you again from our entire family.We would not have been able to do thiswithout your help!

Brad, Antoinette, Makena and Kaden HeierSteele, North Dakota

financial assistance

do you travel to receive quality medical care? If you do, and need

financial help, CCA has a financial assistance program that will

help with food, travel and/or lodging. Call CCA for an application at

800.535.3643. All we ask is that you apply at least four to six

weeks prior to your next appointment.

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CCA’s 2009Distribution of Funds

12

13

cCA families and friends can utilize our customized“Firstgiving” page to tell their story about why they

support Children’s Craniofacial Association and why thisorganization is important to them. Some families areholding events and the site is an additional place for folksto donate for their funders as well as for them to showfunds being brought in for the effort offline as well.

Go to www.firstgiving.com/ccakids and check it out orcreate your own page!

Remarkable Results for 2009 Firstgiving Pageefforts:Dawn Page, Cole’s story . . . . . . $1,000

“Cole was born withPfeiffer Syndrome, a rarecraniofacial syndrome.We have to travel 3+hours away from home inorder for Cole to be seenby a craniofacial team.Some families who havea child with a facialdifference may not be

able to afford to travel for medical care, CCA has helpedfamilies pay for those expenses. Help us help them...tospread awareness and help other families like ours. Pleasedonate for Cole and other children like him.”

Kathie Steinagel,Hannah’s story . . . . . . . . . . . . . . . $545

Pamela Mishra,Baltimore Marathon . . . . . . . . . . . $900

Janis Cazares, Austin’s story(amount raised to date) . . . . . . . . $945

(see Janis’ page, still online)

firstgiving fundraisingfundraising news

children’s Craniofacial Association was pleasantlysurprised by the arrival of a check from the Clear

Lake 8 Ball pool league of the Houston, Texas area!Each year the league, run by Charles “Mac” and

Patricia “Pat” Vereen, proposes a gift to a non-profitorganization. CCA was given the honor back in 2007 andwe are grateful to be chosen as beneficiary once again.

Team members were offered a raffle to win a custompool stick donated by Jerry Pechauer Custom Cues for$2 per ticket. The 45 members purchased a lot of ticketsand in order to increase the donation, some of the topwinning players also gave their trophy money toward theeffort which garnered a generous $1,000 from the group.The contribution was given in honor of CCA kid, NatalieWardlaw, granddaughter of league member, DavidGuerra. Thank you ALL!

clear lake 8 ball

girl Scout Troop 10038 from Baton Rouge, LAincluding Julia Dornier elected to donate theproceeds from their annual Girl Scout cookie

sale to CCA in honor of the memory of Julia’sbrother, Rick. Troop leaders, Anne Milneck andKeiko Teranishi tell us they’ve never seen the girlsso excited working on the project and we’reamazed to hear they’re sending CCA kids almost$700, saying, “They all loved Rick so much andthey want to be a part of the support CCA canoffer to other families like the Dorniers.”

We’re speechless. Thank you from the bottom ofour hearts.

girl scout cookiesfor cca kids$185,000

2010 FAMILY FUNDRAISERGOAL THERMOMETER

100%

90%

70%

50%

30%

10%

80%

60%

40%

20%

here’s a way to support Children’s CraniofacialAssociation at the same time! Book all of your travel

needs at www.ytbtravel.com/ccakids including flights,cruises, hotels, rental cars, even your passport. Apercentage comes back in funds to CCA. And,you mayrest easily, knowing the site is powered by reliableTravelocity.

for our 2009 20thanniversary year we had

a special reward proposalto CCA families whohelped with fundraising –any family raising $5,000or more for Children’sCraniofacial Associationthrough December 31st ofthat year would beawarded one free hotelroom for their stay at thefollowing year’s retreat(i.e. 2009 fundraisingcounted toward the 2010retreat). This reward hasbeen extended indefinitely!

This invitation isextended to all CCAfamilies, including thosealready holding annualevents throughout the yearand it includes any type ofeffort. So all fundraisingefforts for 2010 will gotoward the 2011 retreat.

All families who wish toparticipate are asked tosign a confirmation form in

order that we may trackyour success and budgetfor your room. Pleasecontact the CCA office at214.570.9099, toll-free at800.353.3643 or emailJPatterson@ccakids.com formore information.

Try creating your ownFirstgiving page

A free CCA-customized“firstgiving” site isavailable for anyone whowants to help raise fundsfor CCA. Log ontofirstgiving.com/ccakids andtell your personal storyabout why you supportCCA or post an eventyou’re having. Then, allyou do is email your link toeveryone you know andask them to do the same!This is an especially easyway to “ask” for donationsif you’re uncomfortablewith the face-to-faceapproach.

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planning a vacation?

free 2011 hotel stay!Fundraising reward extended indefinitely!

jylian’s links of love

save

thedate

Monday, September 20, 2010The Golf Club at The Resort on Eagle Mountain Lake

on Monday, September 20, 2010 Children’s Craniofacial Associationwill hold its third annual “Jylian’s Links of Love” benefit golf

tournament, this year at The Golf Club at The Resort on Eagle Mountain inFort Worth, Texas.

The tournament will begin with a shotgun start at 1:00, (registrationbegins at noon with lunch) and will end with dinner, awards, and auctions.

Call the CCA office at 214.570.9099 or visit www.jylianslinksoflove.comfor registration and sponsorship details.

Gifts fromIndividuals

CCA Friends($100 +)Stephanie & Shayne Anderson for Henry’s

MarchAnonymousJulia & Robert BoyceRose Burks for Henry’s MarchBeverly & Jim ButeraJulie Byerlein for Henry’s MarchLaurinda CalongneLisa Carter for Henry’s MarchJoan DornierRene DornierSue DunnKim Duyst for Henry’s MarchPeg ElfersRegina FarrellJarret FinoMartin GruppMary Lib GuercioDarlene & William HunterDeborah JettMelissa & Richard Jones for Henry’s MarchMelanie KoscickAdam LamarRoger & Carolyn LambT. Shaun Larsen for Henry’s MarchEllen LomonocoAnn & Don LucasMelanie Machado for Henry’s MarchGerald MassimeiWanda McDonaldPenny McKeeAnne MilneckTina MooreLorraine Mote for Henry’s MarchBeverly OgdenScott PaynterColleen & Michael Phelps for Henry’s

MarchPaul PokladnikAndrea Richard, D.O.Dr. Milton Richards for Henry’s MarchRobert RutemillerRandolph SchaeferWarren & Donald SchmidtJoanne SchraederDavid SharpeChase StehrGary Tindle for Henry’s MarchJennifer Tinney for Henry’s MarchJonathan WagnerNanette WhitsonSteven & Mary WilhelmKenneth WilsonMyrna & Ronald Zaccagnino

CCA Extended Family($500 +)Rob Hough for Henry’s March

CCA Sponsor($1,000 +)Walter Bettinger

CCA Benefactor($5,000 +)Bill Mecklenburg & Christine Condino

Mecklenburg

CCA Guardian($10,000 +)

CCA Legacy Society

Memorials /In-Honor GiftsAnonymous, in honor of the Clay familyAnonymous, in memory of Rick DornierAnonymous, in honor of John GormanMonica Arcement, in memory of Rick

DornierMelissa Asevedo, in memory of Rick

DornierAgnes Beckett, in honor of Casey Deakins’

BirthdayConstance Betts, in memory of Rick DornierLisa & Michael Bock, in memory of Rick

DornierRandy & Carol Bonnecaze, in memory of

Rick DornierJulia & Robert Boyce, in memory of Rick

DornierRichard Buchholz & Keiko Teranishi, in

memory of Rick DornierRichard & Mary Buchholz, in memory of

Rick DornierHeather Bull, in memory of Rick DornierLaurinda Calongne, in memory of Rick

DornierJeffrey Castor, in honor of Jeremy DaleDadami Family Trust, in memory of

Rosaleen EganMartha Dartt, “in memory of little Rick

Dornier with love”Casey Deakins, to commemorate her

birthdayJoan Dornier, in memory of Rick DornierMelisse Dornier, in memory of Rick DornierRene Dornier, in memory of Rick Dornier,

from the Dornier’s in Klein, TXJames & Betty Doyle, in memory of Shelly

DoyleSue Dunn, in memory of Rick DornierEnglish Family Trust, in memory of

Rosaleen EganRegina Farrell, in memory of Rick DornierFox Rothschild LLP in memory of co-worker,

Herb StevensGolden Girls, LLC, in honor of Seth Swihart

by Michelle CollanerDoug Goode, in memory of Rick DornierMary Lib Guercio, in memory of Rick

DornierKimberly Haycraft, on behalf of the Greer

familyJim & Arleen Heirty, in memory of Robert

BoehmkeJim & Arleen Heirty, in memory of Les

KopeckyDeborah Jett, in memory of Rosaleen EganJennifer Jones, in memory of Rick Dornier

Sharleen & Ray Juneau, in memory of RickDornier

Barbara Kelly, in memory of Rick DornierNanine Kharey, in memory of Rick DornierMay Klein, in memory of Rick DornierJoseph Logan, in memory of Rick DornierAdam Lamar, on behalf of the employees

of Delray Lighting, in memory of JerryFeig

Adam Lamar, in memory of his “belovedfather, Roy Nickola Lamar

& blessed Patti Welch who went to theLord at the age of 9”

Cheryl Landry, in memory of Rick DornierEllen Lomonoco, on behalf of K.C. & John

HaycraftMr. & Mrs. Lawson Lott, Jr., in memory of

Rick DornierMarcia Mackay, in memory of Rick DornierKristen Manning, in memory of Rick

DornierDarryl & Kathleen McCauley, in memory of

Dorothy NesterPenny McKee, in memory of Rick DornierChristine Medici, in memory of Rick DornierDolores Middleton, in memory of Rick

DornierAnne Milneck, in memory of Rick DornierJane Monell, in memory of Suzie MurrayLeanne Monroe, in memory of Rick DornierTina Moore, in memory of Rick DornierFredrick Muncy, in memory of Rick DornierJeffrey Nicholson, in memory of Rick

DornierBeverly Ogden, in memory of Rick DornierStephan Orban, Joel Evans, Bob West, Jake

& Joe Henson, in honor of Avery LytleJill Patterson, in honor of Casey Deakins’

birthdayScott Paynter, in memory of Rick DornierCynthia Perkins, in memory of Rick DornierElizabeth Prince, in memory of Dan PrinceCaryl Rabedeaux, in memory of Rosaleen

EganTammy Raines, in memory of Rick DornierMichael Rice, in honor of JoAnn

KopshinskyRandall Riddick, in memory of Rick DornierLaura Roark, in memory of Rick DornierLeslie Robidoux, in memory of Rick DornierMarie Rourke, in memory of Rick DornierRobert Rutemiller, in honor of Elia’s

birthdayRobert Rutemiller, in honor of wife, Maura’s

birthdayTricia Sanchez, in memory of Rick DornierWarren & Donald Schmidt, in honor of

Jeremy DaleJoanne Schraeder, in honor of Rosaleen

EganDavid Sharpe, in memory of Richard ‘Rick’

DornierCharlene Smith, in honor of Casey Deakins’

birthdaySuzanne Smith, in memory of Rick DornierNathalie Sousa, in memory of Rick DornierErik Swanson, in memory of Rick DornierBeatrice & Eric Tamichi, in memory of

Rosaleen EganArthur & Gail Thomson, in memory of Rick

Dornier

Tegan Treadaway, in memory of RickDornier

Michael & Mary Tuerck, in memory of RickDornier

Lynda Vince, in memory of Rick DornierLeona Vitolo, in honor of Zach BordonaroJonathan Wagner, in memory of Rick

DornierNanette Whitson, in memory of Rosaleen

Brigid Kane EganJeffrey Wild, in memory of Rick DornierSteven & Mary Wilhelm, in memory of Rick

DornierJ.B. & Cynthia Wills, in honor of Reed WillsFrank Wilson, in memory of Rick DornierJean Zabady, in honor of Jeremy DaleCynthia Zumstein, in memory of Rick

Dornier

Jilly Bean Bunch(Donations to provide Financial

Assistance to Families)

Corporate /Foundation Gifts

CCA Corporate /Foundation Friends(up to $1,000)AT&T (United Way Employee Giving)Active Network (registrar for Henry’s

March)Amalia’s Cocina, Inc. for Henry’s MarchArvest for Wendelyn’s Course of DreamsBank of America (United Way Campaign

Employee Giving)Blue Bell Creameries.L.P. for Wendelyn’s

Course of DreamsCommunity Foundation of N. Colorado by

Brinkman Partners FundCostco Wholesale #782 for Henry’s MarchDelray Lighting Employees by Adam LamarE&J Gallo Winery for Henry’s MarchEmerson Climate Technologies

(recommended by Stephen Orban)Express Income TaxFlorshein Brothers Foundation for Henry’s

MarchFunding Factory (Ink/cell recycle rebates)Golden Girls, LLCHonda Financial Services for Little Fire Big

HeartJackTheDonkey.com by David KatzL&G Restaurant for Henry’s MarchModesto Kitchen and Bath for Henry’s

MarchPermission, Inc.Pfizer (United Way Campaign Employee

Giving)Prudential Foundation (Employee/Matching

Gifts)Reed Realty for Henry’s MarchRodig Smile Design for Henry’s MarchRolling F Credit Union for Henry’s MarchEdwin Smith & Sons for Henry’s MarchSutter Central Valley Hospital for Henry’s

MarchTurlock Fitness & Racket Club for Henry’s

MarchTurlock Poker Room for Henry’s MarchUnited Way of California,Capital Region

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

Directed Donations)United Way Mile High (Donor-Directed

Donations)

United Way New York (Donor-DirectedDonations)

Valley Lexus for Henry’s MarchWellpoint Foundation Funds Management

(Employee Giving)Wells Fargo (Employee Giving)

CCA Corporate /Foundation Sponsors($1,000-$5,000)A grant from the Brotman FoundationCharity Motors (CARS-Charitable Auto

ResourceS, charitable auto donation)Foster Poultry Farms for Henry’s MarchGreat Coasters International, Inc. for Little

Fire, Big HeartThe Redwoods Group (Matched Gift of Bill

Mecklenburg)Vivo Brothers, Inc.

CCA Corporate /Foundation Partners($5,000-$10,000)Fox Rothschild LLP, Attorneys At Law, 15

Offices Nationwide, MemorialDonations

United Way of the Greater Triangle(Directed Donations)

CCA Corporate /Foundation Patrons($10,000 or more)Grant(s) from the Jorge Posada Foundation

FundraisingEvents

Up to $1,000Cash Can / Kim Rogers, CCA VolunteerJanis Cazare’s Firstgiving PageInk / Cell Recycle for CCA / CCA Families &

FriendsJewelry Sale / Peggy McDannelLily’s Dinner for CCA / Firstgiving Page

/Tosha Walker, CCA VolunteerLittle Fire, Big Heart Dinner Auction for

CCA / Taryn Skees, CCA VolunteerWendelyn’s Course of Dreams Golf

Tournament / Wendelyn Osborne,CCA Volunteer

$1,000-$5,000Clear Lake 8 Ball / Raffle & Donation

Collection for CCA in honor of NatalieWardlaw

$5,000 or more

$10,000 or more

$20,000 or more3rd Annual Henry’s March for CCA /

Johnson Family; Rachel, TJ, Lauren,Henry

15

*Listed are monetary donations of $100 or more through 1st quarter, 2010. We are extremelygrateful for these and all other fees, purchases, fundraisers and in-kind donations not recorded here.(Note: For space consideration, 2010 donations under $100, CCA “Supporters,” will only bepublished in our year-end list. Cumulative $100+ donations and all In honor or In Memorydedications will continue to be published in each quarterly issue.)

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 – march 31, 2010*

Honorary Chairperson:Cher

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

Canfield, OHTony Davis, DMD, Tuscaloosa, ALDonna Gossett, Cullman, ALPaula Guzzo, Evansville, INBill Mecklenburg, Mission Viejo, CAErica 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 send an email 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.

two of our favorite people, Ann and

Don Lucas of Westminster, Colorado,

celebrated their 45th wedding anniversary

this year. To commemorate the milestone in

their lives, they made a donation to

Children’s Craniofacial Association. In fact,

Ann calls in a donation to commemorate

virtually every family event. She also boosts

our spirits when she calls by telling us what

a great job we’re all doing. The Lucas’s

have been continuous supporters of CCA

since their 6-year old grandson, Brody,

was born with Apert syndrome. Brody’s

family started a CCA family fundraiser

inviting donors to “Be Brody’s Angel”

donorsi n t h e s p o t l i g h t

by helping all CCA kids in Brody’s name.

“Nana & Papa Lucas” were first to

contribute and they continue to give

through regular “in honor” donations.

Many thanks, Ann and Don, for your

ongoing commitment to Children’s

Craniofacial Association!

NONPROFIT ORGU.S. POSTAGE

PAIDRICHARDSON, TXPERMIT NO. 128

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