messagefrom thechair

last October, the boardmet and updated CCA’sstrategic plan, setting theobjectives for theorganization over the nextseveral years. It will beused to measure ourprogress and to make sureall our actions are alignedwith our mission ofempowering and givinghope to individuals andfamilies affected by facialdifferences.As we move into 2009,

the board and staff areusing this strategic plan tofocus on what it will take tomove CCA through the next20 years. Four traits figureprominently in this plan.

ccanetwork

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

newsletter of the children’s craniofacial association Cher — honorary chairperson spring 2009

see chair, page 12

ifirst saw Jolene (Yoli) when I went to Adopt Us Kids.When I saw her face I knew I loved her. I got my

husband and boys to come see her, and they thought shewas adorable. We made contact with her CASA worker,and it seemed like a lifetime before we finally got the callthat we had been the family chosen to adopt Jolene. Ittook almost 3 years from that first contact to bringing herhome with us.When I saw her picture, I thought she had Down

syndrome, but after reading about her and seeing she had

see yoli, page 8

insidecca kid

sara skarshaug. . . . . . . . . . 2

cca adult

meg gray . . . . . . . . . . . . . . 3

firstgiving . . . . . . . . . . . . . 3

cca supersib

kyle skarshaug . . . . . . . . . 4

calendar of events . . . . . . . 5

good news . . . . . . . . . . . . 5

henry’s march for cca. . . . . 6

smiling through the mask . 7

motorcycle raffle . . . . . . . . 7

two-stage palatoplasty . . 10

good news . . . . . . . . . . . 11

heroes4hope gala . . . . . . 13

cca programs . . . . . . . . . 13

craniofacial acceptance

month. . . . . . . . . . . . . . . 14

regional volunteers . . . . . 14

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

financial assistance . . . . . 15

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

yoli’s storyMichael and Paula Flores, proud Daddy and Mommy of Jolene

and a half and has read

many novels, including,

Little Women, Inkheart, IsleRoyal and Our Only MayAmelia, among manyothers.

And that’s just the

beginning of Sara’s after-

school activities — most of

the week she’s going

somewhere or practicing

something. She takes guitar

lessons on Tuesdays, plays

tennis on Saturdays and ice

skates three days a week.

Since this is her fourth year

to ice skate, she’s moved up

to the advanced level. Sara

was recently part of a

synchronized skating team;

last season, she and her

teammates won three

bronze medals. She hopes

to continue skating for a

very long time.

Most Friday nights are

family nights, where

everyone gathers to either

watch a movie or play

games. Recently, she’s seen

three movies she’s

particularly liked — HighSchool Musical 3, MammaMia! and School of Rock.As for music, she likes

listening to Guster, Miley

Cyrus and the Jonas

Brothers. She actually saw

the Jonas Brothers in

concert earlier this year and

had a fantastic time.

Sara has a younger

brother, Kyle. (He’sfeatured in this issue’s

SuperSib article.) He plays

tennis in her classes on

Saturday and comes to lend

his support at her ice

skating competitions. Sara

says it can be tough

sometimes being the big

sister as he “doesn’t listen

sometimes,” but all in all

she loves him very much.

She and her family have

been to some of the CCA

Retreats and had a lot of

fun at every one of them.

Sara has really liked

meeting people that have

“different symptoms” as

well as visiting different

places throughout the

country. She’s had a chance

to make friends at the

retreats, with whom she

really enjoys catching up

every year.

Sara was born with

Crouzon sydrome. She has

had 21 surgeries/procedures

in her life so far with more

planned. In fact, her next

surgery is scheduled around

mid June.

She has some pretty good

advice for other kids going

through similar

circumstances, especially if

people stare or make

comments. She says that if

they think something about

you, it’s more about them,

not you. She also says to

just walk away from the

situation. That’s wise advice

that everyone can heed.

meet sara skarshaug

ccakid

sara Skarshaug, thisissue’s CCA Kid, is a 10

year old from Traverse City,

MI. She attends a local

Montessori school, where

she is in the fifth grade. She

recently had spring break

and enjoyed the time off

from school.

While at school, she

loves her language classes

the best. There she reads,

studies grammar and

writes stories. Right now,

she’s reading the Magic

Treehouse series and is

almost finished with the

City of Ember series, two

of her favorite book

collections.

Her love of reading

extends beyond school.

Sara has been part of a

book club for the last year

2

My parents were able totake me home when I was100 days old.I also have moderate

conductive hearing loss inthat my ear canals areclosed. Right now I wear abone conduction hearingaid. I use American SignLanguage on occasion, andit’s a nice backup when I’min loud places or my batteryis running low.Throughout elementary

school, I had a few surgeriesto rebuild my ears. I had arib graft to build my upperear lobes. Later, I got tiredof the very long process and

as a preteen, I decided onno more surgeries. Iwanted to enjoy my life.Today, I work in an

Individual Options Waiverprogram, where I providecare for those with specialneeds. I enjoy spendingtime with my significantother, friends and family. Ialso like working out withWii Fit, bike riding, seeingmovies, traveling, readingand blogging.

meetmeggrayccaadult

iwas born February 27,1982, seven weeks early,with Treacher Collinssyndrome. This type ofsyndrome is a facialanomaly that causes an

underdeveloped jaw as wellas downward-slanting eyesand other facial features.The doctor who deliveredme described my ears aslooking like “cauliflower.”With that description, mymom didn’t know what tothink. Her only concern wasif I were going to be healthyand have a happy life.I had a tough start in the

NICU incubator. I was 4 lbs,3 oz, and then dropped to3 lbs, 6 oz. With the help ofthe doctors and nurses, Iwas able to get to a healthyweight. I couldn’t eat on myown at first. I had a g-tube.

in conjunction with the 2009 20th anniversary ofChildren’s Craniofacial Association and September’sAnnual Craniofacial Acceptance Month, we propose aspecial way to reward CCA families who raise fundsfor CCA.Beginning right after this year’s retreat and through

2009, any family raising more than $5,000 for CCA will beawarded one hotel room at the next retreat they attend(2010) for the three-day retreat period!This invitation is extended to everyone already holding

events throughout the year and includes any type ofeffort, not just Firstgiving.

All those who wish to participate will be asked to sign aconfirmation of understanding of the provisions of thisprogram. Please call 800.535.3643 or email Jill Gorecki,JGorecki@ccakids.com for the forms to sign up!

Giving Back with FirstgivingWe’re pleased to provide a free CCA-customized

“firstgiving” site for anyone who wants to help raise fundsfor CCA. Log onto firstgiving.com/ccakids and tell yourpersonal story of why you support CCA or post an eventyou’re having. You can set a goal and track success. Folkswill respond with contributions because they know you!This is an especially easy way to “ask” for donations ifyou’re uncomfortable with the face-to-face approach.

firstgiving fundraising proposal to cca familiesThere's still time to get a free hotel stay for the 2010 retreat

3

and love swimmingfreestyle in competitions. Ihave been racing BMXbikes at our local track forthree years now. In thewinter, I love to snowboardat Crystal Mountain Resortnear our house. Thisseason was my first onewith a snowboard. Before Ijust skied.I play the drums and love

all kinds of music. Myfavorite band right now isFlogging Molly. They are anIrish Rock Band. I also like

ccasupersib

i’m Kyle Skarshaug, andI’m eight years old. I’m

in the second grade at TheChildren’s HouseMontessori School inTraverse City, MI. I live withmy mom and dad and mysister Sara, who is thelatest CCA Kid.My favorite things to do

are swimming, BMX racing,Tae Kwon Do andsnowboarding.I just made our local

swim team in December

4

to read. My favorite booksare the “Diary of a WimpyKid” series.My sister Sara has

Crouzon Syndrome. She isgoing to be 11 thissummer. It is really hardwhen we have to go to thehospital for two weeks; itfeels like it is forever forme, so it must be reallyhard for Sara. She hasbeen going to the hospitalsince she was a baby. It is afour-hour drive for us sowe spend a lot of time inthe car going back andforth to Ann Arbor to seeDr. Buchman.

meet kyle skarshaug

H

HH H

HH

H

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

good news

2009 marks the 20th anniversary of Children’sCraniofacial Association! This continues a year-long

commemoration of 20 years of giving hope and acelebration of CCA’s “birthday”!

Our limited edition 20th Anniversary Logo T-shirtsare available for purchase at $20 each plus $5 priorityshipping (for more than one shirt, actual shipping-weightcharges will be quoted). Or one T-shirt is free upon requestwith a single donation of $100 or more.Initial production of the special celebrative shirts comes

in adult sizes, S, M, L, XL, 2XL, and 3XL.

calendar of eventsdate event contactJun 24, 2009 Craniofacial Symposium AReeves@ccakids.com

Great Wolf Lodge www.ccakids.orgGrapevine, TX 800.535.3643

Jun 25-28, 2009 19th Annual Family Retreat AReeves@ccakids.comGreat Wolf Lodge www.ccakids.orgGrapevine, TX 800.535.3643

Jul 19-22, 2009 NACFC www.ameriface.orgTuscany Suites and CasinoLas Vegas, NV

Jul 23-17, 2009 Camp About Face 317.274.2489Bradford WoodsMartinsville, IN

Jul 18, 2009 Jaci's Country Dance Bash JSamhammer@gmail.comMorrisville, PA

Aug 2-5, 2009 Camp Courage www.CHOA.org/campcourageWinder, GA

Aug 22, 2009 4th Annual Wendelyn’s Course wendelynyvonne@hotmail.comof Dreams Golf TournamentCountry Club of ArkansasMaumelle, AR

September 2009 2nd Annual Ryan’s Road ngulich@yahoo.comBig Flats, NY

Sep 5, 2009 3rd Annual Seth’s Stride mythreekids@neo.rr.comfor CCA Stacy SwihartCanton, OH www.firstgiving.com/sethsstride

Sep 10, 2009 Heroes4Hope Gala JGorecki@ccakids.comJorge Posada Foundation www.ccakids.orgNew York, NY 800.535.3643

Sep 12, 2009 2nd Annual National Picnic Day AReeves@ccakids.comin observance of CraniofacialAcceptance MonthFlag Pole Hill, 10 AM-1 PMDallas, TX

Sep 12, 2009 Alexa’s Appeal deniserast@sbcglobal.netDinner/Auction, 5-10 PMModesto, CA

Sep 21, 2009 Jylian’s Links of Love JGorecki@ccakids.comGolf Tournament jylianslinksoflove.comWhitestone Golf Club 800.535.3643Benbrook, TX

Sep 27, 2009 Strike Out Differences tiger32094@yahoo.comin Memory of Wendy for CCA Kids Tamara Mantlo3pm-6pm Crosley Bowling LanesVancouver, WA

Oct 3, 2009 5th Annual Friends of Jeremy gdale@stny.rr.comGolf Tournament www.friendsofjeremy.comCorning Country ClubCorning, NY

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…”

Our friends at Permission offer a 15% discount onall products if you mention CCAkids with your order!

www.permissionskincare.com

5

Mascot Race was ahighlight of the day. Weadded a one-mile course,with Mike Boyer takingfirst place at 5 minutes, 14seconds. Our 5K wasespecially thrilling whenMiguel Nuci crossed thefinish line with a newHenry’s March record of 15minutes, 22 seconds!We would like to thank

all of our sponsors and aspecial thank you to FosterFarms for their continuedsupport and generouscontribution to CCA. Inthese rough economictimes, every dollar donatedwas sincerely appreciated.Please visit our websites toview race results, additionalphotos and sponsors:warriorathletics.com/henrysmarch ormyspace.com/henrysmarch.

the Second AnnualHenry’s March for CCA

was a huge success — weraised $21,000!We had a strong feeling

that our race was going tobe fantastic when the raceregistration forms startedpouring in. Last year, wehad less than 100 peoplepre-register for our race. Infact, in 2008 we hopedthat we’d reach 100runners by race day. Thisyear, we had more than350 people pre-register forour event and many moreregister the day of therace.Our event was featured

in the local press, includingThe Modesto Bee,TurlockCityNews.com,

Turlock Living Magazine,“Good Day Sacramento”and MyTurlock.com.The biggest surprise this

year was when TheModesto Bee story waspicked up by Yahoo andran nationwide on theirhomepage! We receivedmore than 90 emails fromacross the country frompeople moved by the storyor who also had childrenwith a craniofacialcondition. The ModestoBee website had so manyhits on the story that theyhad to disable thecomment boxes due tosystem overload! Wow —who would have guessedthat a photo and story oftwo little boys would drawso much attention?Race day was amazing!

California StateUniversity, Stanislaus,once again played host toour event. We had vendorbooths, face painting,music, awards and a raffle.The mayor of Turlock, JohnLazar, fired the startingshot.The children had a blast

running in the Kids’ Dash,and, once again, the

6

Henry’s March for CCABy Rachel Johnson

fundraising news

$178,000

2009 FAMILY FUNDRAISERGOAL THERMOMETER

100%

90%

70%

50%

30%

10%

80%

60%

40%

20%

who was born with Pfeiffersyndrome, traveled with hisfamily from the Dallas/FortWorth area to share theirstory with guests. Therewas a humorousmonologue by JanaMcKnight. Otherpresenters during theevening were Dr. MichaelSpann, reconstructive andplasic surgeon withArkansas Plastic Surgery,Dr. James Suen,Chairman/Professor atUniversity of Arkansasfor Medical Sciences inOtolaryngology–Head andNeck Surgery.Special thanks to

Restaurant 1620chef/general manager, TimMorton and chef/owner,Evette Brady, for makingthe event possible. (Timalso caters Wendelyn’sannual golf scramble forCCA!) Thanks also toSteve Copley, RobertaLong, Cindy Ford,Annette Hamby, andEbony Blevins for theirhelp at the event.Wendelyn would like tothank local media outletsfor promoting the eventincluding EvanHoffmeyer, MelindaMayo, Katrina Dupins,Casey Stokes, andPamela Smith from ABCaffiliate KATV; CheesaParham from Arkansas

DemocratGazette;Donna Terrell,FOX16 News,and Trey Mallott with theNBC affiliate, KARK.Ryan’s parents, David

and Michelle Hollidaysaid they were glad toattend and honored tomeet special dinner guest,Arkansas Lt. GovernorBill Halter. The family hasdedicated themselves tohelping others withcraniofacial conditions and

cCA Volunteer fundrais-er, Wendelyn

Osborne, held her inaugu-ral event, a five-coursedinner / presentation shecalled, “Smiling Throughthe Mask,” which she ded-icated to the memory ofDr. Paul Tessier, the fatherof craniofacial surgery whowas one of her own sur-geons.Held at Restaurant 1620

in Little Rock, Arkansas,the evening began withWendelyn talking aboutCCA and its vision thateveryone be accepted forwho they are, not howthey look. She sang,accompanied by SteveStruthers on the ukulele,“Somewhere Over theRainbow/It’s a WonderfulWorld,” during a slideshow of the Myrtle BeachRetreat.

Dr. Kirt Simmons, acraniofacial orthodontist atArkansas Children’sHospital, shared the dentalcomplexities of craniofacialpatients. Three-year oldCCA kid, Ryan Holliday,

Evette Braden, Wendelyn Osborne and 1620Chef, Tim Morton

believes Wendelyn’s dinnerevent helped foster theawareness and educationof the challenges faced bythese individuals. They told,Wendelyn, “We reallyappreciate what you havedone and continue to do!”Children’s CraniofacialAssociation agrees!

smiling throughthe mask

2009 motorcycleraffle for cca

johnny Pag (J.R. Pagnini) has given away bikes to anumber of charities he supports, CCA included! Lastyear he donated a motorcycle to the Heroes4Hope Gala

in New York City which was then autographed by theentire New York Yankees team! It auctioned for more than$27,000! This year CCA is happy to be holding a raffle forone of the Johnny Pag bikes and the winner gets tochoose the color!CCA volunteers, Rob Gorecki, the Seitz family,

Emerald and dad, Al Demor and members and friends ofthe O’Brien family all helped sell raffle tickets at tradeshows attended by Johnny Pag Motorcycles. Ticketsare $5 each, or 5 for $20, and the drawing isn’t untilAugust, 2009 so there’s still plenty of time to get involved!Call our office if you’d like to sell tickets in your area.

See www.johnnypag.com.

7

fundraising news

AR LT. Governor, Bill Halter,Michelle Holliday and her twochildren, Kathryn and Ryan

out to be the mostbeautiful little girl, withsuch happiness, personalityand strength. We all loveMomma Mary! She hasbecome family to us.Jolene is now 6. She has

had all her fingersseparated and her toesseparated to help herbalance as she walks. She’shad her hamstring andAchilles tendon featheredon her right leg, so she canstand flat footed. She hasone more major surgerypending, her mid-face, tohelp create a deeper eyesocket, better sinus cavityand a bit of an overbite.Jolene attends

kindergarten, and thechildren are wonderful toher. She goes to regularclass part of the day andspecial education for therest of the day. She hasphysical, occupational andspeech therapy several timesa week. Her vocabulary isalways expanding, andshe’s learning her ABCs,

numbers, colors and basicsign language.She also loves being in

school plays and has somuch fun. For theChristmas play last year,Jolene did not have to havesomeone stand with her orhold her; she stood on herown. It was awesome tosee the happiness on herface as she sang the songsall the other children sang.Jolene attends First

Baptist Church with us,where she goes to herworship class and Sundayschool. She enjoys it somuch and has becomequite well known. I cannotbelieve the number ofpeople who come up to

yoli, from page 1

Apert syndrome, I began tosearch the Internet forinformation. This is when Ifound Teeter’s page(www.apert.org). Whatwonderful information wefound.We made plans to go

make our first visit to seeJolene in August 2005. Wearrived at our hotel and metwith her CASA worker,Paul, who took us over toMomma Mary’s house tovisit with Jolene. During thisvisit we found out that shealso had shaken babysyndrome. She suffered astroke because of theshaking, which affects herright side. She also has ashunt, suffers with seizuresand has multiple allergies.Her right arm and leg bothdraw up. She had justundergone cleft palaterepair and would need moresurgeries in her future.Needless to say, we wereoverwhelmed with all thisnew information about herand were really scared.We made plans to come

back to visit and play withJolene while Mary went outfor a little bit. She loved topick up blocks and stackthem. She and Mike had ablast. We took her out tobreakfast and she had manystares. We didn’t care as shewas so happy. We werethere for about five days,but we didn’t make adecision to adopt her untilwe knew we had all herresources available wherewe lived.

I called Children’s MercyHospital and found thatthey had several childrenwith Aperts. I was sorelieved. I called our schoolto see if all her needs couldbe met and they could.They could provide herwith physical, occupationaland speech therapies whileshe attends school.I called the local hospital

to see about havingphysical and occupationaltherapy done for Joleneover the summer. Not onlydid the therapist work atthe hospital but also at theschool she would attend.After all the research, I feltwe had all we needed andcontacted some friends andfamily and talked about ourdecision. We knew that thislittle girl would need a lotof support.We got her home that

December, and she wentright to sleep in her newbed. She never cried forbeing homesick and hasnever shown any kind ofseparation anxiety.Jolene is our only girl.

We have three sons, Keith,26, Joshua, 21, andStephen, 16. I have twosisters and they all haveboys. She is the firstgranddaughter on my side,and my mom adores her.Momma Mary had Jolene

since she was 3-and-a-halfmonths old and had seenher through some of hermost difficult surgeries. Wefeel that Jolene’s personalitycame from Mary. Becauseof her, Jolene has turned

8continued next page �

Adoption day: Judge Robin Crouch, Paula, Michael and Yoli Flores

Two winning cups: A CCA mugand: The Stanley Cup! 9

her and say, “Well there’sJolene. How are you?”And she’ll say “Fine.”(She’s been working onsaying the word “fine” forawhile and is doing verywell. Although Daddy hasbeen teaching her to say“groovy,” I’m trying todiscourage that for now.When we watch churchservices on TV she will puther hands in the air andpraise as well. It’s sotouching to see her do this.She loves to go shopping

— she’s a girl’s girl forsure! She also enjoys beingoutdoors, and if she hadher way, she’d be there allthe time. She loves ourcats, with “Kitty” beingthe only one that toleratesher loving hugs. Jolene isalso a big help in thekitchen and anywhere elsearound the house. Sheenjoys being read to, and

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 join discussions. Join one of four age group levels:

Kindergarten thru third grade, fourth and fifth grades, sixth thru 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

likes to read by herself,whether it is a newspaperor a book. We don’t knowif she understands whatshe’s reading, but whenasked, will tell you in her“Yolese” what she hasread.Sometimes I wish we

could have gotten Jolene

when she was that littleone year old I saw inAdopt Us Kids, but I am sothankful that we finally didget her. It has turned outto be a wonderful journeywith her. She keeps usbusy, and she keeps uslaughing. She shows somuch love to us and toothers.Jolene has learned to say

“I love you!” Sometimesit’s hard to understand, butwe know what she’ssaying. She gives great bighugs, but most of the timethey come with severaltight hugs and pats on theback. We do so enjoy thisfrom our girl.

In 2006, we went to theCCA retreat in Salt LakeCity, Utah, and had thebest time. We met so manywonderful children andtheir families. We madefriends with another Floresfamily there. Their little girl,Shara, has Apert’s, and sheand Jolene hit it off. I hopeto see them again in Texasthis year. It will be great tocatch up with the rest ofthe families when we getthere.What a blessing CCA has

been for our kids. We justlove Annie Reeves. She’s socaring and so concerned forall of us.

cca mugshot

Find out more about our story on the Adopt Us Kids

website: http://www.adoptuskids.org/resourceCenter/

parentSupport/familyStories/flores.aspx

Here’s our Teeter’s page, too:

http://www.apert.org/flores2/index.html

God bless you all!

over the past 20 years,a palatal prosthesis

has been utilized in thecare of cleft palate children.Initially, it was used as anadjunct in presurgicalorthopedics, but it soonbecame part of thetreatment of both unilateraland bilateral clefts.Over the past 18 years,

more than 700 childrenunderwent staged palaterepairs. We performed aretrospective studyreviewing patientsundergoing the two-stageclosure with emphasis onspeech, growth and rate ofpharyngeal flaps. Here’show our protocol hasevolved:1 Presurgical orthopedics at6 weeks of age.

2 Cleft lip repair after 6-8weeks of orthopedics.

3 Soft palate cleft repairwith Z-plasty at 9 monthsof age with prosthesis.

4 Definitive repair of hardpalate cleft at 4 years.

5 Alveolar cleft bonegrafting at 6 years.

Our Utah protocol hasshown the two-stagepalatoplasty to be anexcellent approach to cleftpalate repair over the past18 years — with minimalmorbidity, good facialgrowth and good speechoutcomes.We obtained our data by

reviewing patient chartsand then following up withour cleft palate andcraniofacial team as well asour speech pathologist andorthodontist. We revieweda total of 450 patients, ofwhich 329 patients wereunilateral clefts and 121bilateral clefts. We had anadditional 35 patients thatwere cleft palates only thatunderwent a two-stageclosure.The two-stage closure

has been controversial asthere have been concernswith speech. Our initialresults revealed atechnically easier lip repairwith better alveolaralignment with presurgicalorthopedics. The residual

hard palate cleft becamesmaller with an averagesize of 3 mm at 4 years ofage, making it very easy toclose the cleft. There were25 patients where the cleftmargins were so closelyapproximated that therewas no functional cleft.(See photos below.)Fistula rate was less than

one percent as the residualhard palate cleft wasrelatively simple to close.The speech concerns wereinitially the mostworrisome aspect of thisprotocol, but despite initialarticulation concerns, thespeech patternapproached normalcy withongoing speech therapy.The pharyngeal flap rate

has been less than onepercent. With delayed hardpalate repair and with aneasier technical repair, theamount of resultant scartissue was much less,allowing for bettermaxillary growth.The incidence of Le Fort

osteotomies has been lessthan 10 percent. As anadded aspect of usingpalatal prosthesis, palataladhesions have beenperformed to assist inclosures of very wide cleftpalates (i.e. Pierre Robin).The final soft palate Z-

plasty repair was not

performed until 16-18months of age. There havebeen 48 patients in thiscategory, of which one hasnecessitated a pharyngealflap. All have had goodspeech outcomes.

10

two-stage palatoplastyA Utah ProtocolBy Dr. Louis Morales

good newswendelyn Osborne of

Little Rock, Arkansaswas featured on her localABC affiliate, KATV asArkansan of the Week inJanuary. She credits producer,Patrick Green, anchorman,Scott Inman, and the crewthere with getting her storyout. Wendelyn is a CCAadult whose condition iscalled CMD, craniometaphyseal dysplasia. She is an activevolunteer for CCA, spreading awareness and helping toraise funds for our cause. Congrats Wendy!

austin Freeman receivedhis first promotion, on March21, 2009, in the Civil AirPatrol! CongratulationsAustin!

elizabeth Hubbardrecently received some

“Good News.” She has beenaccepted into LandmarkCollege in Putney, Vermont!Congratulations, Elizabeth!

the Grathofffamily are

pictured here withthe Stanley Cup!They even broughttheir CCA Mugand took a pictureof the “TwoWinning Cups.”(See Mugshots onpage 9.)

irecently got a fundraisingcommunication thatsaid, “When Sam Walton,founder of Wal-Mart, wasasked how he would copewith a recession, he simplystated, ‘I decline toparticipate.’ Not a badanswer. People are tired ofhearing gloom and doom.Donors want assuranceyour mission is alive andwell and continues tobenefit others.”Children’s Craniofacial

Association believes this tobe true and we want toassure all CCA stakeholdersthat we continue topersevere during thiseconomic downturn.Through good times aswell as during struggles,our programs and servicesremain in place. We arefrugal with operatingdollars in order to maintaineducation and assistance tohelp our ever-growingnumber of families in need.

One example is that, fornow, our newsletter is 16pages instead of 20; asappropriate, we condensecontent in order to cutcosts in less painful ways,rather than cuttingprograms. The pie chartillustrates for donors wherecontributions are used. Iam committed to makingsure all of you know howimportant your gifts are tothis cause and tomaintaining yourconfidence in ourstewardship of theresources you provide. Wewant you to feel you’vemade the best possibledecision about giving; andas you conduct your duediligence, feel free to callon us for any informationyou may seek. Yoursupport is critical andextremely appreciated.

Sincere thanks,Jill GoreckiCCA Development

feeling good aboutyour decision to give

11

2008 Distribution of Funds

QualityCCA strives to provide

quality programs andservices and tocontinuously improve theways we provide support.We have expanded our useof technology by providingwebinars and onlinesupport groups. We havealso provided customizedCare Pages to help familieskeep their loved ones up todate on their child’sprogress, and we haveprovided customizedFirstgiving pages for ourvolunteers to promote theirfundraising events andcollect donations online.All of these quality

services enhance thesupport that we offer ourfamilies. As we moveforward, we will continueto seek out the best waysto provide quality supportand services to our families.

CommitmentDedicated staff and

hundreds of volunteers

have consistently used theirtalents and contacts tohelp grow CCA and spreadawareness of individualsliving with facialdifferences. Children whohave had an incredibleexperience at the familyretreats have gone back totheir schools and heldspecial awareness events.Now, and in the future,

we are committed toreaching more individualsand families, to providingexcellent service based onfeedback from you and toraising the level ofacceptance of those livingwith facial differences.

ImpactAnyone who has received

medical travel assistance orattended the family retreaton scholarship has felt theimpact CCA can make.Anyone who has watchedtheir child grow up in theCCA family and go on tocollege or a career has feltthe impact that CCA canmake. Anyone who hasseen a group of CCA kidsbuilding the groundwork

chair, from page 1 of lifelong friendships atthe dinner/dance on thelast night of the familyretreat has felt the impactCCA can make. And youmust admit you’ve feltCCA’s impact by readingthe quarterly newsletter.This impact has been

growing over the last 20years and will continue togrow. As many of the“original” CCA kids engagewith the organization nowas CCA adults, the nextgeneration of CCA kids willbe growing, learning,making friends, buildingconfidence and gettingproper medical carebecause of the impact thatCCA will make.

SustainabilityBy far, this is the most

important trait, becausewithout sustainability, CCAwould not have been ableto achieve all it has. Youhave all made a significantimpact on CCA’s ability toprovide the programs andservices. We have beenable to last for 20 yearsthanks to your donationsand fundraising events, aswell as donations fromyour family and friends.With your continuedsupport, thousands ofchildren and adultsimpacted by facialdifference will benefit fromthe programs and servicesthat we offer.My 9-year-old son,

Jeremy, was born withGoldenhar syndrome. Wefound CCA and attendedour first family retreat in2003 when he was 2 and a

half. We knew before weleft that first retreat thatwe would be back for more.Not only has Jeremy

benefited from being partof CCA, but so has hisyounger brother Tommy.He sees differences inindividuals but recognizesthem for being uniquepeople who havesomething to offer him,such as fun, laughs orfriendship.Twenty years ago, people

living in circumstancessimilar to ours had nosupport such as CCA. Itmakes me realize how luckywe are to have Jeremygrow up during a timewhen he can benefit fromall CCA has to offer.As we celebrate CCA’s

20th anniversary, I think ofall the accomplishmentsand memories that havebeen created through thehard work and generosityof many individuals.Now, I ask you to take a

moment to consider whatyou can do to sustain thisgreat organization so CCAkids in the future willbenefit from the manyquality programs andservices. Take a momentand consider how you canhelp to maintain thecommitment to raiseawareness for people livingwith craniofacial difference.Together, we can make animpact now and in thefuture.

George DaleCCA Board Chair

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

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Families of craniofacial patients often call CCA to seekemotional support, discuss problems and identifyresources. Through our database, we are able to networkfamilies with support groups and/or others who havesimilar conditions and experiences. We also keep a listof helpful resources and are always willing to listen andoffer emotional support to family members who need ashoulder to lean on. For further assistance or informationcall Annie Reeves at 800.535.3643 or emailAReeves@ccakids.com

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

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

• 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

save the dateMonday, September 21, 2009

Jylian’s Links of LoveWhitestone Golf Club | Benbrook, TX

on Monday, September 21, 2009Children’s Craniofacial

Association will hold its secondannual “Jylian’s Links of Love” benefitgolf tournament at Whitestone GolfClub in Benbrook, Texas. Thetournament will begin with a shotgunstart at 1:00, (registration begins atnoon with lunch) and will end with adinner and silent auction.

Visit www.jylianslinksoflove.com for registration andsponsorship details.

children’s CraniofacialAssociation is proud

to announce we haveagain been invited to jointhe Beneficiaries Circle ofthe Jorge PosadaFoundation Eigth AnnualHeroes4Hope Gala. TheGala will take place onThursday, September 10,2009, at the Sheraton NewYork Hotel and Towers inNew York City.Joining other organizations

such as Montefiore MedicalCenter and the NationalFoundation for FacialReconstruction, CCA willraise funds and awarenessfor programs and services.As a member of theBeneficiary Circle, the JorgePosada Foundation grants100% of the proceeds fromour efforts.The Jorge Posada

Foundation is a nonprofitorganization founded bythe New York Yankees’All Star Catcher, JorgePosada and his wife,Laura. Their son, Jorge, Jr.was diagnosed withCraniosynostosis when hewas just 10 days old andhad to undergo seven majorsurgeries to correct thecondition.Heroes of Hope Gala is

attended by many of Jorge’sfriends from the New YorkYankees team, both past

and present, includingDerek Jeter, BernieWilliams, Jason Giambi,Alex Rodriguez, TinoMartinez, MarianoRivera, Robinson Cano,Bobby Abreu, WillieRandolf and Joe Torre aswell as many othercelebrities and closefriends. Last year’s emceeswere Kelly Rippa andMark Consuelos. Thisyear, actor Paul Rudd willhelp host the festivities andthe event will honor theliving past New YorkYankees catchers!Tickets are on sale at

$750 per ticket or a tableof 10 for $7,500.Families are encouraged

to spread the word tobusinesses or others whomay wish to attend orsponsor a table for thecause. The tablesponsorships do counttoward our 20thanniversary promotionfor CCA families to gettheir 2010 Retreat hotelstay free!For more information on

tickets and corporatesponsorships, please call CCADevelopment Director, JillGorecki at 1.800.535.3643,or email her atjgorecki@ccakids.com.

Eighth Annualheroes4hope gala

this year marks the fifthyear CCA will observe

September as CraniofacialAcceptance Month acrossthe nation. CCA families,friends, volunteers andrelated support groups willbe widening the circle ofacceptance for individualswith facial differences. Thegoal is to create awarenessthat “beyond the face is aheart.”As part of the 5th Annual

Craniofacial Acceptance

Month, CCA will hold it’s2nd Annual National PicnicDay on September 12th (orother date in September ofyour choice). CCA familiesacross the nation will holdpicnics giving them achance to get togetherwith other families in theirareas, while promotingawareness in thecommunities.

It’s not too late, if youwould like to hold a picniccontact CCA ProgramDirector Annie Reeves.CCA will invite all of thefamilies in your area andhelp you organize yourpicnic.In addition to raising

awareness and acceptance,CCA is raising funds tosupport programs andservices available to allindividuals with facialdifferences and their

families. Contact CCADevelopment Director, JillGorecki for materials aboutthis year’s fundraisingevents.We hope you will join

this important effort!Please call 800.535.3643.

Craniofacial Acceptance Month

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

call or email CCA ProgramDirector, Annie Reeves at800.535.3643 orAReeves@CCAKids.com.

public awareness aboutcraniofacial conditionsis important on several

levels.It’s important that families

find quality medical care,that healthcareprofessionals are aware ofthe special medical andemotional needs of childrenand adults with facialdifferences, that the publicunderstands and acceptsfacial differences and thatindividuals with facialdifferences feel accepted.The regional volunteers

and CCA will now turn tolocal areas to recruitvolunteers who willdistribute educationalmaterials throughout theircommunities.

CCA Regional Map

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

SOUTH: West South Central East South Central South Atlantic

WAWA

OROR

CACA

NVNV

IDID

MTMT

WYWY

COCO

NDND

SDSD

NENE

KSKS

OKOK

MNMN

WIWI

MIMI

MIMI

ILIL OHOHININ

KYKY

TNTN

MSMS ALALGAGA

FLFL

SCSC

NCNC

VAVA

WVWV

PAPA

MDMD NJNJ

DEDE

NYNY

VTVT

NHNH

MEME

MAMACTCT

RIRIIAIA

MOMO

ARAR

LALA

UTUT

AKAK

HIHI

NMNMAZAZ

TXTX

WA

OR

CA

NV

ID

MT

WY

CO

ND

SD

NE

KS

OK

MN

WI

MI

MI

IL OHIN

KY

TN

MS ALGA

FL

SC

NC

VA

WV

PA

MD NJ

DE

NY

VT

NH

ME

MACT

RIIA

MO

AR

LA

UT

AK

HI

NMAZ

TX

regional volunteers

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Gifts fromIndividuals

CCA Friends($100 +)

Mario AdamoAnonymousDebra BreslowDiana CritchlawFred & Judi FreemanSarah HallHugh & Joanne JarvisRoger & Carolyn LambRobert NordnessMary ReifAndrea Richard, D.O.Randolph SchaeferBarry ScurranCourtney VincentKenneth Wilson

CCA Extended Family($500 +)

CCA Sponsor($1,000 +)

John & Sheryl Paul

CCA Benefactor($5,000 +)

CCA Guardian($10,000 +)

Marie Florence Desrosiers TrustBequest

John and Patricia Dyer

Memorials /In-Honor GiftsYolanda Baker, Austin, TX, in

honor of Henry JohnsonDeborah Breslow, in honor of Mrs.

Alice Kintisch, Edith Katzourin,Rabbi Elyse Frishman, CantorLeon Sher, thanks for helpingwith Robbie’s Bar Mitzvahpreparation

Brookhall School Staff in name ofJanice Stegmann

Christian Callens, in memory ofSidney Goldman

Judy Donaldson, in memory ofTalin Robert Shaw

Jim & Arleen Heirty, in memory ofBill Hayes

Jim & Arleen Heirty, in memory ofBob Watier

Sylvia & John Loving, in honor ofRyan Holliday

Ann Lucas, in honor of BrodyLucas from grandparents

Jim & Maryjo Montalbano, inhonor of their daughter,Jennifer’s 34rd birthday

Johnny Pag, in honor of RobbieGorecki

Harold & Elvia Prange, in memoryof Carolyn Muse

Mary & Megan Reif, in honor ofJoAnn Kopshinsky & RobbieGorecki

Fred & Rose Seitz, in honor of allCCA kids

Stephen & Lila Shain, in memoryof Talin Robert Shaw

Jeffrey & Patricia Sharp, in honorof Rick Dornier

Doris & Ralph Teneyck, in honor ofTamara Mantlo

Timber Ridge Elementary SchoolCollection in honor of CaleMorris

Mary Wilcox, in the name of SarahWilcox

J.B. & Cynthia Wills, in honor ofReed Wills

Corporate /Foundation Gifts

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

Bank of America (United WayCampaign Employee Giving)

Charity Motors (proceeds from adonated vehicle)

Creative Growth Counseling &Coaching, Inc.

Funding FactoryJustgive (donors listed separately)Neal Oral & Maxillofacial Surgery,

PLLCNetwork for Good (donors listed

separately)Pfizer (United Way Campaign

Employee Giving)The Prudential Foundation

(Employee/Matching Gifts)

The Prudential Foundation(Matched Gift of DianaCritchlaw)

Safeway, Inc. (purchases percent-age incentives)

Sarah Hall Productions by SarahHall

Schoolpop (online purchases per-centage program)

United Way Mile HighUnited Way New YorkUnited Way of Tucson and

Southern Arizona (Donor-Directed Donations)

Wellpoint Foundation FundsManagement

Wells Fargo (Employee Giving)

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

Association Works by John &Sheryl Paul

A grant from Lifetime FitnessFoundation

The Redwoods Group (MatchedGift of Bill Mecklenburg)

Vivo Brothers, Inc.

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

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

A grant from Horace CabeFoundation

A grant from Elsie & MarvinDekelbaum Family Foundation

A grant from Jorge PosadaFoundation

Grants from May and StanleySmith Charitable Foundation

FundraisingEvents

Up to $1,000

Alexa’s Appeal for CCA / DeniseRast, CCA Volunteer

Brookhall School Staff Collectionin name of Janice Stegmann

Carnival of Caring / Avery Lytle,CCA kid

Ink / Cell Recycle for CCA / CCAFamilies & Friends

Tamara Mantlo’s Firstgiving PageJohnny Pag Motorcycle RaffleTimber Ridge Elementary School

Collection in honor of CaleMorris

Hannah Steinagel’s FirstgivingPage / Kathie Steinagel, CCAVolunteer

$1,000-$5,000

Be Brody’s Angel / Jennifer Lucas& Family, CCA Volunteers

Friends of Freddie Firstgiving Page/ Rose Seitz, CCA Volunteer

Seth’s Stride / Swihart Family,Stacy Swihart, CCA VolunteerCoordinator

Smiling Through The Mask Dinner /Wendelyn Osborne, CCAVolunteer

Starbucks Community Clean-Up /Emily Tipton, Organizer w/JanaPeace, CCA Volunteer

$5,000 or more

$10,000 or more

$20,000 or more

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

*Listed are Monetary Donations of $100 or more through 1st quarter, 2009. We areextremely grateful for these and all other donations, fees, purchases, fundraisers and in-kinddonations not recorded here. Note: For space consideration, 2009 donations under $100will only be published in our year-end list. Cumulative $100+ donations and In honoror In Memory dedications 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)

cca 20thanniversary t-shirts

our limited edition20th Anniversary

Logo T-shirts areavailable for purchaseat $20 each plus $5priority shipping(more than 1 shirt,actual shipping-weight charges will bequoted). Or one T-shirt is free upon requestwith a single donation of $100 or more.Initial production of the special celebrative

shirts comes in Adult sizes, S, M, L, XL, 2XL,and 3XL.

H

HH H

HH

H

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

donors, january 1 – march 31, 2009*

financial assistance

do you travel to receive quality medicalcare? If you do, and need financial

help, CCA has a financial assistanceprogram that will help with food, traveland/or lodging. Call CCA for an applicationat 800.535.3643. All we ask is that youapply at least four to six weeks prior toyour next appointment.

15

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, Morrisille, 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 Gorecki

Administrative Coordinator:Jana Peace

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

NONPROFIT ORGU.S. POSTAGEPAID

RICHARDSON, TXPERMIT NO. 128

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

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 who

would like to be placed on themailing list please forward to ustheir name and address.

cCA is proud of our relationship withStore Manager & Coffee Master, Emily

Tipton at the Starbucks located acrossfrom Medical City Hospital on thesouthwest corner of Forest Lane and ParkCentral (7718 Forest Lane).For the past couple of years, Emily’s store

has participated in volunteer effortsthrough Starbucks “Make Your Mark”program which enables corporate “teammembers” to volunteer for causes thattouch their hearts. In turn, Starbucks hasgranted $10 for every volunteer hour up to$1,000 for each approved project.Emily’s Starbucks store location is along

the parkway bike paththat follows the creekand goes behind thestore. She helps CCArecruit volunteers whopick up litter and trashitems strewn aroundthe path area and then

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

Emily with CCA Kid, Brooklyn Nicholl

RETURN SERVICE REQUESTED

return to the store, after their communityservice, for refreshments, door prizes andfun. All efforts are later rewarded withgrant funds from Starbucks for CCA(projects have been pre-approved by thecorporation/foundation).Emily enjoys volunteering for CCA

whenever she can and loves to put smileson our kids’ faces. Thanks Emily. We feelthe same about you!