ccanetwork - children's craniofacial · pdf fileryan’sparents,david andmichelle...
TRANSCRIPT
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,[email protected] 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 [email protected]
Great Wolf Lodge www.ccakids.orgGrapevine, TX 800.535.3643
Jun 25-28, 2009 19th Annual Family Retreat [email protected] 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 [email protected], PA
Aug 2-5, 2009 Camp Courage www.CHOA.org/campcourageWinder, GA
Aug 22, 2009 4th Annual Wendelyn’s Course [email protected] Dreams Golf TournamentCountry Club of ArkansasMaumelle, AR
September 2009 2nd Annual Ryan’s Road [email protected] Flats, NY
Sep 5, 2009 3rd Annual Seth’s Stride [email protected] CCA Stacy SwihartCanton, OH www.firstgiving.com/sethsstride
Sep 10, 2009 Heroes4Hope Gala [email protected] Posada Foundation www.ccakids.orgNew York, NY 800.535.3643
Sep 12, 2009 2nd Annual National Picnic Day [email protected] observance of CraniofacialAcceptance MonthFlag Pole Hill, 10 AM-1 PMDallas, TX
Sep 12, 2009 Alexa’s Appeal [email protected]/Auction, 5-10 PMModesto, CA
Sep 21, 2009 Jylian’s Links of Love [email protected] Tournament jylianslinksoflove.comWhitestone Golf Club 800.535.3643Benbrook, TX
Sep 27, 2009 Strike Out Differences [email protected] Memory of Wendy for CCA Kids Tamara Mantlo3pm-6pm Crosley Bowling LanesVancouver, WA
Oct 3, 2009 5th Annual Friends of Jeremy [email protected] 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, [email protected]
12
13
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 [email protected]
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 [email protected].
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 [email protected].
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
14
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 [email protected] 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!