ccanewsletter of the children’s craniofacialnetwork association Cher — honorary chairperson spring 2005 inside
cca kid andrew perry ...... 2
cca grad robbie gorecki...... 3 fundraising news...... 5 cca programs...... 5 message from the calendar of events . . . . . 5 chairman facial palsy ...... 6-7 Andrew and Karin Perry having fun at a retreat. e are a very special odd fellows...... 8 wcommunity. We donors ...... 9 andrew’s story share things that many by Karin Perry others — sometimes not cut-a-thon, dallas . . . 10 even close friends or relatives — understand. 3 cheers ...... ecoming a mom is a hard job. No one prepares you 10 Patients, parents and bfor what will be the most difficult (and rewarding) job siblings, and the staff, craniofacial of your lifetime. When you become a mom of a child with volunteers and supporters acceptance month . . 12 special needs, it is even more difficult. When I had my son, of CCA look a little deeper, Andrew, I was a first-time mom — and I was single. understand a little fuller My pregnancy was complicated throughout, and I had 2005 Retreat Info what it means to love a many ultrasounds. Despite all the prenatal testing, no one person for who they are — The 15th Annual Cher’s was prepared for the complications at Andrew’s birth. I not how they look. Family Retreat will be at remember that things went terribly wrong. Andrew was It’s really a wonderful the Gaylord Opryland Hotel rushed away from me, and then doctors told me that he benefit of being involved in in Nashville, TN, on June would be taken to Children’s Hospital in Boston. I was told CCA. We become more 23–26. For more informa- that he had a multitude of problems, including a severe sensitive to the feelings of tion, contact Annie Reeves facial deformation. No one could tell me exactly what was at 800-535-3643 or those around us because wrong with him, but they did not feel confident that he [email protected]. our horizons have been would make it through the night. broadened. Yes, we see If you make your own Suddenly I was making medical decisions for a baby I cruelties, but we also see reservations, please let had seen only for a moment. I was alone in a hospital, wonderful examples of them know that you are recovering from a c-section, giving permission by phone kindness and bravery. with Children’s Craniofacial for doctors to do surgeries on my tiny premature baby Association or use Group who I had not even touched or held. Code X-CCA05. see andrew, page 4 see chair, page 11 empowering and giving hope to facially disfigured individuals and their families ccakid
meet andrew perry
ndrew Perry is fear- far with a few more to go. aless. The 11-year-old Luckily, he celebrated his from Hopkinton, MA, has first full year without any perfected his snowboarding operations.Congratulations, technique so much he now Andrew! boards down the most Right now, he has just difficult trails possible — about finished the fifth Andrew Perry double-diamond! grade. He enjoys Math and He is also very brave. Science the most. This sum- play video games and col- show and visit her back- He’s had 20 operations so mer he’ll have more time to lect Pokémon and Yu-gi-oh stage. Last time he sat on cards. He’ll also pursue his the front row. This time he other outdoor hobbies: was further back, and Cher swimming, camping and wouldn’t have any of it. She fishing. had Andrew move seats so He’s also going to the that she could see him dur- upcoming retreat in ing the show. How cool is Nashville, his third retreat so that? far. If you haven’t heard his Andrew has gone rendition of Cher’s song, through much in his young “Believe,” you’re missing life. Twenty operations is a out! He stole the show, and lot to endure. But his family the mike from the DJ, last and good friends, Cameron year. Hopefully he’ll sing for and Nathan, have stuck us again. with him through the rough As for Cher, she and times. His advice to other Andrew are good friends. In CCA kids is to be brave. fact, he saw Cher in concert And on the practical side, on Tuesday, April 12. This is he offers this advice: “Don’t his second time to see her eat too soon after surgery.” 2 meet robbie gorecki
y name is Robert how to deal with the mean mGorecki. My family kids and fend for myself. and friends call me Robbie Sometimes I’d just stare or Rob. I’m 18 years old back. Sometimes they tried and have lived in to get physical and pick a Brookfield, WI, all my life. I fight. I didn’t back down was born with a craniofa- and they usually left me cial anomaly called alone. People seem to fear Goldenhar syndrome, things they don’t under- which caused a facial cleft. stand. I was missing an eye and I have a reconstructed an ear and the roof of my ear and a fake eye. Other mouth (palate). My mom than looking different, my tells me I had my first main challenge is my reconstructive surgery speech, particularly speak- when I was three and half ing clearly enough for peo- Robbie Gorecki months old. Somewhere ple to understand. after two dozen or so Even with one eye and Every year the retreat When CCA started their operations she lost count. one working ear, I can do was our family vacation. I’d summer fundraiser in 2001 My syndrome doesn’t everything anyone else my also get to visit the Harley- raffling off a motorcycle, I affect my mind’s ability, but age does. I drive a car Davidson dealership in became the charity repre- having a lot of operations (truck). I also own and ride whichever city it was held sentative/ poster boy. Each when I was little set me a motorcycle. to add to my pin collection year we travel to Sturgis, back a bit. I didn’t walk I’ve liked motorcycles for for my biker vest. SD, and I’m in my element until I was two years old as long as I can remember My parents put up with with all my biker buddies. and I didn’t know my – maybe because we live in my interests, but are not After graduation, I will alphabet until second the Milwaukee area, home looking forward to my attend MMI (Motorcycle grade. I never liked being of the Harley. Bikers are desire to get tattoos. I have Mechanics Institute) in in the “special” classes but nice to children, and while scars on my arms and chest Phoenix, AZ, in the fall. it helped, and I’ve caught growing up I made a lot of from surgery, and I figure a I am not afraid to go out up. I will be graduating friends in the motorcycle tattoo is no worse! I tell my into the world and live my from high school this June. industry. mom, “God put me on this life, and I hope I inspire People are pretty nice for I think having CCA’s sup- earth looking different; I any younger kids with the most part, but kids can port while I was growing might as well run with it.” craniofacial difficulties to be mean. I have an older up made a big difference do the same. brother, Erick, and when in my life. I’ve been we were younger, he pro- involved since the start, tected me a lot when peo- and I’ve only missed one ple would stare. But we family retreat. I met other each went to different kids like me, and my whole grade schools and jr. highs, family found out that we ccagrad and by the time I got to aren’t the only ones high school, he had already dealing with craniofacial “God put me on this earth looking different; graduated. I had to learn problems. I might as well run with it.” 3 andrew, from page 1 The doctors struggled to appointments with speech human and that I do have find a “syndrome” that fit therapists and occupational limits. I allow myself to feel Andrew. (They never did. therapists that came to my sorry for a while, cry, and He is totally unique.) home four times a week. I let it all out. It is hard to be Andrew remained on a res- got up all night long to the one making all the pirator for eight days and feed him by g-tube and felt decisions. It is hard to find was unable to eat by lucky to have three or four time to get sick. It is hard mouth. Eventually, Andrew hours of sleep a night. to remain upbeat and posi- began breathing on his During the next few tive when you see your own, and a g-tube was years, things became easi- child in pain. It is hard to placed to feed him. er. Andrew got healthier as ask for help. When I look back on the he got older, and he had Finding CCA three BEFORE: Andrew at 3 months first year of Andrew’s life, I fewer appointments. The years ago was a gift. wonder how I survived. He machines and equipment CCA has been the most was hospitalized until he became part of my life and valuable resource I have was five weeks old, and no longer seemed so over- had in Andrew’s lifetime. I then I brought him home. whelming. I took many finally have people who I The bedroom we shared precautions to make sure can talk to, and who looked like a hospital room. my family knew how to understand what it is like I was totally unprepared for operate his feeding pump to have a child who looks taking care of a newborn, and suction machine and different. Going to retreat never mind a newborn with knew his medication was the best thing I all these extra attachments schedule. I had laminated have ever done. Not only AFTER: Andrew now at and parts! index cards in his diaper did Andrew meet other 11 years I remember counting the bag with details about his children who were differ- I felt as if I might drown in number of appointments care in the event I was ent, but I also met some my own tears. I felt as if the we had during his first year unable to be there. amazing families. I have weight of the world was — 57 scheduled clinic Andrew did not have become friends with other resting on my shoulders. My appointments, not counting another surgery until he moms, and shared my family tried to be helpful, the trips to the pediatrician was five years old, when story. I have found that but ultimately, I felt solely for weekly weight checks, they took a nerve from his there are a lot of single responsible for life and colds, ear infections and leg and transplanted it into moms like me. Meeting death decisions for my son. bouts with pneumonia. his face. When he turned them has been inspirational When my parents took When Andrew was four eight, Andrew went to me. me to see Andrew in months old, I returned to through the most radical I am lucky. I have a child I Boston, I was introduced to work to keep my medical surgeries of his life. He had adore, and now I have a the overwhelming world of insurance, and was strug- a multi-step jaw distraction wonderful man in my life medicine and the NICU. gling to stay awake at my that involved more than 11 who is supportive of both Andrew had been diag- job as a special-needs trips to the operating room of us. When people ask me nosed with micrognathia (a teacher. I paid a nurse who in 10 months. In total, we how I did it for all those tiny, underdeveloped jaw), was home on maternity spent nearly 30 nights in years, I smile. My life was microglossia (essentially no leave to care for him dur- the hospital. Together, insane, overwhelming, tir- tongue), seventh nerve ing the day, as I could not Andrew and I have gone ing and crazy. But, I have facial palsy, optic nerve find a daycare center that through 20 surgeries. this terrific kid, and when I hypoplasia, a heart defect, would take him. I rushed It is hard to be the sole see him smile his own spe- and irregular brain activity, home each day after caretaker during these cial smile, I know he was which the doctors thought school to take Andrew to stressful times. I have had worth it all — every might be seizure activity. Early Intervention and keep to realize that I am only minute! 4 ccaprograms and services in the spotlight
Families of craniofacial patients often call CCA to seek emotional support, discuss problems and identify resources. Through our database we are able to network families with support groups and/or others who have similar conditions and experiences. We also keep a list of helpful resources and are always willing to listen and offer emotional support to family members who need a shoulder upon which to lean. For further assistance or information call Annie Reeves at 800-535-3643 or email [email protected] programs we offer •Toll-free hotline • www.ccakids.com • Doctor referral Web site • Information and support • Annual Cher’s Family • Educational booklets Retreats did you receive “a special • Financial assistance • Public awareness • CCA newsletter, • Family networking message from cher”? CCA Network • Advocacy
y now, everyone on our mailing list should have breceived the CD message from Cher appealing for 2005 calendar of events donations to CCA. Please consider helping with an amount of $25, $50, $100 date event contact or more so we may continue to fund our programs and June 11 Cleft Lip/Palate Care www.stjohnsmercy.org/ services which are a vital part of the physical and emotional Birth through Maturity professionals/ Conference on cleft lip and palate cleftpalate.pdf health of so many kids. St. John's Mercy Medical Center Your assistance furthers our mission to empower and give St. Louis, MO hope to facially disfigured individuals and their families. June 12–17 Camp About Face 317.274.2489 Children’s Craniofacial Association envisions a world where Bradford Woods Outdoor Education people are accepted for who they are, not how they look. Recreation and Camping Center Your help is most appreciated. Thank you! Indianapolis, IN June 23–26 Children’s Craniofacial Association 800.535.3643 15th Annual Cher’s Family Retreat www.CCAKids.com Be one of the first 100 people Nashville, TN to donate $100 or more and June 24–26 NOVA Family Conference www.novanews.org Conference concerning hemangioma receive a copy of the 20th and vascular malformations Triangle Park, NC Anniversary DVD, Mask, July 17–19 North American Craniofacial www.cleftadvocate.org starring Cher! To find out Family Conference Las Vegas, NV more, go to our Web site August 12 CCA Win-a-Bike 2005 www.CCAKids.com at www.ccakids.com! Raffle drawing in Sturgis, SD 800.535.3643 September Craniofacial Acceptance Month www.CCAKids.com 800.535.3643 5 facial palsy by Christopher JM Brooks, MD
hink about the last face- expression. In people with then the injured nerve can tto-face conversation you facial paralysis the nerve be re-approximated direct- had. Consider how much can be absent at birth, ly. It will still take several your communication and rendered non-functional by months for activity to understanding was derived virus or inflammation, or return to the muscle, as from facial expression. injured by trauma or the nerve regenerates Remember the feelings surgery. Injury to this nerve towards the target muscle. expressed, the subtleties can occur inside the skull, If there is a loss of length conveyed, the joy or outside the skull before the of the nerve, as when a anguish instantly revealed. nerve branches or to any of segment is removed with a For more information about Now imagine the frustra- the individual branches. tumor, then a nerve graft Facial Palsy, download this tion and isolation felt by The exact location of the can be harvested from booklet from our Web site, someone whose face does injury will determine the another part of the body, www.ccakids.com not speak — no smile, no resulting deficit and ulti- usually the leg, and Local muscle transfer blink, no pucker for a kiss. mately direct the treatment. attached between the two involves the use of other Facial paralysis can affect Static reconstructions, cut ends of the facial nearby facial muscles, pri- only a small part, or some- some of the earlier meth- nerve. The facial nerve marily those used for times half, of the face. ods of reconstruction, still fibers then grow through chewing, to provide move- Occasionally, the entire face have a few limited applica- this nerve graft to the tar- ment for the face. These is enveloped in a mask-like tions. As implied by the get muscle. Alternatively, if muscles are controlled by a silence. But whether it is a name, static reconstruc- the facial nerve is resected different nerve, which is small area affected or the tions do not move the all the way back to where usually not affected by the entire face, facial palsy is a face. They involve the sus- it exits the skull, a nerve paralyzing process. Some devastating problem. pension of facial tissues in graft can be placed from of the more common tech- Fortunately, there are some a more normal (less droop- the facial nerve on the niques involve the use of answers. ing) resting position. These unaffected side of the face the temporalis muscle or Nearly 40 muscles control techniques can significantly to the remaining nerve on the masseter, two muscles our facial expressions. Used improve resting appearance the affected side of the used in chewing, or a com- in various combinations, and oral competence face. This is called a cross- bination of the two. While these muscles are capable (drooling) but do nothing face nerve graft. some facial motion can be of creating more than to provide animation to the In cases of congenital or gained with this type of 5,000 different expressions. face. Animation requires any long-standing facial reconstruction, the move- Almost all of these muscles nerve input and muscle paralysis lasting more than ments are often unnatural are controlled by a nerve response. one to two years, the tar- and never spontaneous, as appropriately called the When a nerve is injured, get muscle atrophies can the person needs to learn facial nerve. The facial the nerve fibers between no longer be stimulated by to “bite-down” to create a nerve exits the skull behind the injury and the target a nerve. Reanimation of a smile. the opening of the ear, muscle die. These fibers longstanding facial paraly- The most complex but then travels through the then regenerate at a rate sis, therefore, requires new also the most promising parotid gland in front of of about one millimeter per muscle, which can be stim- technique for facial reani- the ear, branching exten- day. If an injury to the ulated to be placed in the mation is a combination of sively to reach all of the facial nerve or branch does face. muscles used for facial not involve a loss of length, continued next page 6 cross-face nerve graft and fibers to grow into the new booklets functional free muscle muscle, function slowly transfer. Transfer of a mus- returns. CA is proud to cle to the face requires In people with bilateral announce the addition microsurgical reconnection facial palsy, such as in c of the blood vessels of the Moebius syndrome, a of three syndrome booklets muscle to blood vessels in cross-face nerve graft is to our series of booklets the face. In addition, there not possible since neither intended for new parents. must be a microsurgical side of the face has a nor- A Guide to Understanding connection of the nerve of mally functioning facial Crouzon Syndrome, A the muscle to a nerve in nerve. Here there is no Guide to Understanding the face. There are several choice but to use different Facial Palsy and A Guide to muscles that are frequently nerves, such as the nerve Understanding Fibrous used, including the gracilis to the masseter (chewing) Dysplasia are currently from the inner thigh, the or to the hypoglossal available for downloading new program pectoralis minor from the (tongue movement) to con- on CCAKids.com. director chest, and the serratus trol facial movement. In In addition, we updated from the trunk. Each has separate procedures muscle four of our existing booklets: e are sad to its benefits and drawbacks, is transferred to each side A Guide to Understanding its proponents and critics. and one of these nerves wannounce the Craniosynostosis, A Guide departure of Program Free muscle transfer for connected to the muscle. to Understanding Apert Director Jana Butera. facial palsy requires at least While spontaneity remains Syndrome, A Guide to two procedures. First, a a challenge, symmetry can Understanding Treacher Although Jana is not in the be quite good. cross-face nerve graft is Collins Syndrome and A office anymore, she will connected to segments of Regardless of the cause, Guide to Understanding continue to serve on the the facial nerve on the facial palsy can be quite Hemifacial Microsomia. Program Committee and unaffected side. The nerve devastating. While reani- You will find them at remain very involved with graft is then tunneled to mation of the face remains CCAKids.com, too. the organization. the paralyzed side and left a significant challenge, We thank Dr. Scott At the same time, we’re under the skin in front of there are reconstructive Bartlett, Dr. Ian Jackson, the ear, or in the upper lip. options available to restore happy to announce that Nine to 12 months later, facial movement and Dr. Hrayr Shahinian and our former office manager, after the facial nerve fibers thereby significantly Dr. Linton Whitaker for Annie Reeves, with whom from the unaffected side improve socialization and their contributions toward many of you have spoken have grown through the self-esteem. Today the face these publications. And a or met at the Tempe special thanks to Diana graft to the paralyzed side, that does not speak need retreat, has accepted the Sweeney for her help with the free muscle is trans- not remain silent. Program Director position. ferred to the paralyzed side coordinating them. Printing Annie has already jumped of the face. Its blood vessels of four of the booklets was you talked. right in, with this edition of are connected to blood ves- generously donated by we listened. CCA Network being her sels in the area, its muscle CRW Graphics located in fibers meticulously oriented Pennsauken, NJ. Layout first project. ave you checked out to produce the appropriate was donated by Robin Congratulations Annie! the CCA Web site smile angle, and the nerve h If you have any program Williamson of Williamson lately? We have made to the muscle connected to Creative Services, Inc. needs please email Annie lots of changes to the the cross-face nerve graft. at [email protected] site as a direct result of located in Carrollton, TX. After a couple of months or call her at 1-800-535- the survey we sent out in More booklets will be to allow the facial nerve 2003. Check it out! available soon. 3643. ccakids.com 7 cut-a-thon raises $1,682
allas-based Salon D (www.salond.com) and CCA dteamed up for a Cut-A-Thon fundraiser on April 3. Salon D’s top stylists gave their time, and their amazing Rob Gorecki hangs with a few of the capable cooking/cleanup expertise, to create trendy new hairstyles for a minimum crew of Century Lodge #492 Odd Fellows after the St. Patrick's Day fundraising dinner. $25 donation. From 11 that morning until 5 in the evening, the salon was abuzz with laughter, smiles and amaz- ing new dos. Jason’s Deli, Chili’s and Celebrity Bakery donated a yummy selection of sandwiches, appetizers and sweet CCA Kid, Torey Harrah and her treats, and Southwest friend are all smiles after getting Airlines, Black-Eyed Pea, their new dos. Pappas Brothers, Del Frisco’s and Starbucks donated door prizes. Salon D gave away a massage, Beverly Butera donated a tennis racket and Annie Reeves, CCA’s new program director, gave a Mary Kay gift basket. A representative from Jingles gave away gift bags filled with fabulous hair care products. April Noble Grand of the Century Lodge, Ken Loos and lodge Johnson donated a doggie treat basket and a gift certifi- brother/fundraiser organizer, Doc Remer accept Thank You cate for April Showers (her invitation/card company). certificates from Jill Gorecki on behalf of CCA. Everyone had great time. CCA kid Torey Harrah and good odds her friend got haircuts. Jylian Bilbow and Preston Johnson were also on hand to join in the festivities. big Thank You to “Doc” Remer, his wife, Maggie Many thanks to Ardem, owver of Salon D, for working aand all the lodge brothers of Century Lodge #492 closely with CCA to coordinate this event. Independent Order of Odd Fellows. The group held a “The Cut-A-Thon was a success,” said Annie Reeves. fundraising dinner for CCA on St. Patrick’s Day and raised “We had a great opportunity $470 in a few hours. to help the kids and their fami- Jill Gorecki traveled with her son Robbie to Carpentersville, lies as well as walk away with IL for the evening event which was held at the lodge head- a new look,” she said. Annie quarters. They presented framed certificates of thanks to plans to coordinate the next Doc and the group. Rob, who was befriended and intro- Cut-A-Thon later this year with duced to the Odd Fellows in 2001 during CCA’s motorcycle another salon. raffle fundraiser in Sturgis, SD and joined them for a CCA If anyone wants to host a fundraiser with Robbie Knievel in 2002, enjoyed hearing similar event in their town, call how much he’d grown since they saw him last! Annie at 214-570-9099 or toll free at 800-535-3643. Jylian Bilbow and her mom 8 share in the fun. donors, october 1, 2004 – march 31, 2005*
Robert & Barbara Mellendorf William H. & Eleanor B. Kampis Grocery Gifts from Karen N. Miles Overbeck Memorials / Katie’s Clothes Bin Individuals Rich Mohn Steven L. Page In-Honor Gifts La Petite Jewelers Janell E. Nelson Margaret Salvioli Lockheed Martin Employee Eldora & Howard Niedemiller Ms Shareall George Beaver Giving CCA Supporters Kevin D. Ortman William Sims Megan Marie Brasser SBC Employee Giving (up to $100) Candace Powell Stephanie Mary Sklar Jana Butera Safeway Inc. (Purchases Marcy Anderson Tommy & Annie Reeves Mitchell & Sharon D. Smith Jim & Beverly Butera Percentage Incentives) Elizabeth J. Bainbridge-Vitez David & June Simon Susan & Oyvind Solvang Larry Carpenter Smith Family Tire, Inc. P. G . Barger Ronald & Deborah Smith Everett L. Stow, Jr. Jeff & Jeanette Frazier The Frugal Flower, Inc. Linda Bergman Andrea Stewart Morton & Eunice Teitelbaum Lenore Goldfab (Purchases Percentage William & Arlene Blumenthal William H. Jr. & Kimberly K. Robert Vargas James L. & Alison B. Hawse Incentives) Mike Bosko Tawney Courtney Vincent John Holcomb The Mortgage Center P. Bowker Leona Vitolo Robert J. & Arlene D. Weis John & Arleen Heirty The Prudential Foundation Donna L. Boyer Carole Voss Dennis Wooden Hillcrest Plymouth, LLC Matching Gifts Megan Marie Brasser Daniel Walker John & April Wharton John Holcomb Triangle United Way (Directed Jana Butera Terri Warren Paul & Patricia John Donations) Larry Carpenter Rita R. Watton Kathryn W. Kemp United Way of Fresno County Barbara J. Wiedenman CCA Extended Family Patsy Ng (Directed Donations) Barbara S. Chernetz ($500 +) Lillian Cintron Joann Witt Tommy & Annie Reeves United Way of Metropolitan Susan & Oyvind Solvang Lucian & Flora Conner John & Laurie Bovenkamp Tarrant County Humanity Patricia & Harold Timmer Fund (Directed Donations) Elgin & Gwenith Corzine Diana M. Critchlaw CCA Friends Van Andel Arena Ann Dickinson Rob Eijkholt United Way of Long Island ($100 +) Richard S. Ward Lumber Co. Cathy L. Evans Jeffrey A. Fearon, MD (Directed Donations) John & April Wharton Richard P. Ferle Marcy Anderson Sondra P. Hicks United Ways of New England Barbara J. Wiedenman Frank & Maryann Gilson C. Barrett Stephen Wright (Directed Donations) Robert J. & Arlene D. Weis Ronnie & Donna Gossett Jim & Beverly Butera Van Andel Arena Meredith Green Joe W. Cherry Richard S. Ward Lumber Barbara Greenfield Roger S. Chin CCA Sponsor Corporate / Company Edward C. & Constance Haines George Dale ($1,000 +) Wellpoint Foundation Denyse Halperin Foundation Gifts (Employee Giving/Matching John & Carrie Follett William A. & Jannell L. Kevin Eugene Haugh Funds Management) Lenore Goldfab Bloomhall John & Arleen Heirty World Craniofacial Foundation Jill Gorecki April Fontana (Cher The Love CCA Corporate / Eddy & Deborah Hoenig World Reach, Inc. (Employee Lenore Goldfab Campaign) Foundation Friends Paul & Patricia John Giving Funds Management) Kenneth Goodman Daniel & Denise Paulson (up to $1,000) Kathryn W. Kemp James L. & Alison B. Hawse John & Charlene Smith Michael & Kathryn Kevany John Holcomb AT&T Employee Matching CCA Corporate / Marlee MacLeod Sondra P. Hicks Albertsons (Purchases Foundation Sponsors Sanford & Karen Markovitz Kathy J. Hubbard CCA Benefactor Percentage Incentives) ($1,000-$5,000) Angela M. Maubach Mary Jones ($5,000 +) America’s Charities (Employee K. McCoy Roger & Carolyn Lamb Giving Funds Management) Association Works Peggy J. McDannel Heather Lermont-Pape Charles & Willmetta Allen American Express Employee The Brotman Foundation June K. McDowell Stephen Luhrs Estate Giving The May Department Stores/ Don Meier Patsy Ng Robert & Maryellen Fettig Bank of America Employee Foley’s Hazeldeane Pritchard bequest Matching more cut-a-thon pictures… Bonzai, LLC Cars Helping Charities, Inc. CCA Corporate / Castle Custom Cabinets, LLC Foundation Partners Dell Employee Giving ($5,000 or more) Doug Doggett Jewelers Fiserv CBS Biedenharn Foundation Funding Factory (Rebates The Chatlos Foundation, Inc. Program) Edmund & Alice Opler Greater Milwaukee Foundation, Foundation Inc. Wal-Mart Foundation Harley-Davidson of Bellingham, Inc. HP Employee Giving Hillcrest Plymouth, LLC
* Listed are monetary donations since last September. We are extremely grateful for these and all prior donations, raffle ticket purchases, fundraisers and in-kind donations not recorded here.
We do our best to accurately recognize donors. If you notice an error, please let us know.
CLOCKWISE from top left: Char Smith, CCA executive director, gets her hair cut by one of Salon D’s best stylists. Preston Johnson and his mom have a good time in Salon D’s lobby. Kelly Liszt, CCA’s newsletter editor, gets a new look. Meet the Cut-A-Thon gang. 9 Donna Gosset shares cheers how she organized a 3 for volunteers! Walk-a-thon for CCA ast Elementary kids walk instead of jump. eSchool wanted to do The kids could get people something different this to sponsor them, for any year for their PE fundraiser. amount, to walk in a walk- For many years the school a-thon, which would take participated in the “Jump place during each grade’s Rope for Heart,” a won- PE time. The kids would derful fundraiser, but they walk for at least 30 min- wanted to do something utes on the playgrounds of for another charity. Coach the school. Prizes would be Chuck Bowling and Ms. awarded for different Parker asked me if CCA money levels raised. Coach had a similar type of Bowling thought it was a fundraiser. I told him I did great idea. not know of anything, but I wanted the kids to I was sure we could come know who they were rais- up with something. ing the money for, so I did After some thought, I a presentation featuring had the idea of having the pictures of CCA kids I met last summer at the retreat. purchase T-Shirts for prizes. They all know that I have a We had parents purchase craniofacial condition, but I some top prizes, like a bicy- wanted them to under- cle, a Game Boy Advance stand what some of these and gift cards. The kids at kids have to go through. East were touched by the They are kids just like presentation, and got really they are — they just look excited to raise some different. money for CCA. The community really We held the walk-a-thon came together and donat- on April 1, and the kids ed prizes and money to and I had a ball. I learned we have a lot of caring and wonderful kids and parents at our school. East Elementary raised more than $7,000! First place winner Micha Waters, a third grader, won the top fundraiser 10 continued next page chair, from page 1 committee structure that is are there day in and day accomplishing a tremen- out working with families. I have often tried to dous amount of fabulous Jana Butera did great explain to people not work. I’ll continue to serve work with our families, and involved with CCA how on the Board until the end we’re sorry to see her leave great the annual retreats of my term and after that the staff but happy to are. How comforting and I’ll be a CCA volunteer. I know that she will contin- fun they are. It’s a time — can’t ever imagine not ue to be involved with our sometimes the only time being involved in the work. Annie Reeves is during the course of a year organization in some way. moving into Jana’s position — when the CCA “Kids” It has been an honor to and brings the same level (many well into adulthood serve with the past and of care and commitment to now) can let down their current board members. our programs. Jill Gorecki hair and relax and do They bring a deep commit- has been toiling for several some giggling. They and ment and lots of time and years to build a base of their families don’t have energy to our organization. funding support for the to explain anything to Thanks also to Sheryl and Association, and I believe anybody. John Paul of Association- that work will pay off with prize with $367 raised. He My daughter, Shannon, Works, our advisors who interest in the near future. won the bicycle. Second introduced me more than a helped us chart a course And a very special thanks place winner, Levi Hicks, dozen years ago to CCA. for the future and continue goes to the amazing also a third grader, raised The yearly retreats were to make sure we stay on Charlene Smith. Name a $215 and won the Game always a high point for us. that course. The amazing virtue and Char has it — Boy Advance. Third place Always a special time to — and growing — body of compassion, good (and winner, Lauren Rasbury, a meet new people and have volunteers that contribute sometimes weird) humor, fifth grader, raised $186 some kick-out-the-jams fun so much to the Association professionalism and, most and won a $50 Wal-Mart at The Party. I’ll always be deserve a huge “Thanks.” of all, a dedication to the gift card. Fourth place win- grateful to Shannon for Of course, one person core value of CCA — the ner, Stephanie Swindle, a getting me involved in deserving of tremendous need to empower and give fourth grader, raised $146 CCA. It’s been one of the appreciation is our hope to facially disfigured and won a $10 gift card best and most rewarding Honorary Chairperson, individuals and their from Blockbuster. experiences in my life. Cher (and you, too, Deb families. I am proud of them all At the May board meet- and Jennifer), who kept for doing such a wonderful ing, I am resigning as chair this organization alive Tim Ayers, Board Chair job. We are planning on of the Board. We have a through some hard times. If you feel you have skills that making this an annual great Board of Directors, Last and far, far, far, far would benefit CCA, please call fundraiser. Hopefully other which now has a strong from least is the staff. They 800-535-3643 and ask for a volunteer application. schools will do the same. With activities like this walk-a-thon, kids can learn a senior moment Go to our Web site to the valuable life lesson of buy tickets or for info aby Boomers (folks born from 1946 – being kind and respectful on the CCA to those who they perceive b1964) are fast approaching retirement Motorcycle Raffle! as different, no matter years and, with growing families, are drafting IF YOU WOULD LIKE where they may go. wills and trusts as well as estate planning. — Donna Gossett TO SELL RAFFLE Please remember CCA when making those plans! CCA Board Member TICKETS CALL KELLY Contact us if you’d like ideas which could have a tax at 800-535-3643. advantage for you and your loved ones. It will have a profound and positive affect on our future! 11 craniofacial financial acceptance month assistance Honorary Chairperson: knowing the reason – accepting the difference o you travel to Cher receive quality d Board of Directors: medical care? If you CA has designated help build awareness, we Tim Ayers, CHAIR Washington, DC do, and need financial Tony Davis, Tuscaloosa, AL cSeptember as encourage you to visit help, CCA has a Donna Gossett, Cullman, AL Children’s Craniofacial ccakids.com and share financial assistance Heather Lermont-Pape, Indianapolis, IN Acceptance Month to your story and perspective program that will help Dan Paulson, Fargo, ND with food, travel support the association’s of craniofacial conditions. Rose Seitz, Youngstown, OH and/or lodging. Call Bill Sims, CPA, Dallas, TX vision of a world where all If your story is chosen, CCA for an application Robert Vargas, Dallas, TX people are accepted for we will contact you for Robin Williamson, Carrollton, TX at 800-535-3643. Stephen Wright, San Francisco, CA who they are, not how permission to use it in one All we ask is that you Medical Advisory Board: apply at least four to they look. of our media campaigns. Jeffrey Fearon, MD, CHIEF ADVISOR six weeks prior to your September will also mark In addition to your story, next trip. CCA Network Editor: the time when many please let us know of any Kelly Liszt children are returning to groups that might like to CCA Network Design and school. We encourage be involved in our fund- download the Production: Robin Williamson, Williamson parents and our many raising. newsletter Creative Services, Inc. volunteers to continue to There will be many activi- Executive Director: f you are currently help promote belonging, ties during the month of Charlene Smith receiving the newsletter hope and friendship September, so watch our i Program Director: by mail, but would rather Annie Reeves between our kids and their Web site for more informa- download it from community. tion in the coming months. Development Director: CCAKids.com, let us know Jill Gorecki As an effective way to by sending your email to Administrative Assistant: get out the message and [email protected]. Kelly Silverman The online version is in Business Manager: full color! Cathy Evans
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