ccanewsletter of the children’s craniofacialnetwork association Cher—national spokesperson 2018: Issue 2 inside cca kid aaron kimberlin. . . . . 2 cca supersib aiden kimberlin. . . . . 3 cca adult megan brown...... 4 garden tour & tips. . . . 5 morgan meck’s match play...... 6 retreat recap first-time attendee . . . .14 pep recap...... 16 very year, I hear, “This eli potter: good news. . .18 ewas the best Retreat yet!” I am not sure how wonderkid speaker that can be possible, but training...... 19 somehow I feel that way miles for cca kids . . . . 19 too! The 28th Annual delaney’s fishing trip. . . . 22 Family Retreat & madison peck, bella’s journey, Educational Symposium then & now ...... 24 was held in Salt Lake City, UT, June 28th-July 1st, dale family is a wonder .26 my resolve By Eve Fuentes and was by far, our largest hailey’s fan club . . . . . 28 retreat to date, with 160 y husband and I were prepared for our daughter to retreat raffle...... 29 families—representing have some type of medical issue, but were not fully m 168 individuals and 1 dog testimonial...... 30 prepared for the diagnosis . We knew she had a type of with facial differences— calendar of events. . . . 30 Craniosynostosis through the numerous ultrasounds prior from 33 states, plus to her arrival, but even the doctors were shocked with the sponsors & volunteers. . . 31 Australia, Canada, and the syndactyly of her fingers and toes when she was born . 3 cheers for volunteers. . . 32 United Kingdom . Of the 160 Once we were both discharged from the hospital with families, 55 families were laundry lists of her conditions, despite my knowing better, I first-time attendees . searched the internet . With such a large group, My heart sank . we took over the scenic All I felt was that my little girl’s future was going to be Little America Hotel . filled with surgeries and worse, the unknown . To add fuel The hotel provided us to the fire, a family relative (a former Special Education gorgeous accommodations Assistant at that!) told me that Bella would be wheelchair- conveniently next to the see bella, page 20 see retreat recap, empowering and giving hope to individuals and families affected by facial differences page 8 meet aaron kimberlin

yet Aaron knew it was time After several tests, Aaron back like a champ, usually to be born . He knew he was diagnosed with a faster than doctors say, and needed a little help . congenital heart defect . surprising everyone with his Aaron was born at He had two holes in his resilience and strength . His 35 weeks . Araceli and heart, and a valve that zest for life is contagious . Matthew held their breath needed to be repaired . Aaron’s favorite activities until he gave his first After about six months include dancing and breath, as the doctors had of rigorous feeding and with his brother . warned them his lungs medication schedules at He has inspired so many may have not yet been fully home, doctors determined with his story already, and developed . Apart from a Aaron needed to undergo will continue to make a couple of bruises from the open-heart surgery . Up difference as he grows delivery, Aaron looked and until this point, the heart older . seemed like a healthy, and condition seemed like an fully developed, baby boy . isolated medical condition . He followed mom to her It was right before the first hospital recovery room, surgery when suggestions aron Riley Kimberlin and posed for a thousand pointed out that Aaron ahas always been a pictures with grandparents, may have been born bundle of surprises . But his aunts, and cousins . with Crouzon surprises make him one of However, his blood sugar syndrome, just the most incredible, unique levels skyrocketed all night like his mom . and interesting kids on the long . The next day, Aaron Blood tests planet . was whisked off to the revealed it He celebrated his third hospital NICU unit where to be true . birthday on June 30 with he would spend the next Aaron cake and donuts (he has a 29 days of his life . The underwent tremendous sweet tooth), NICU was an emotional his first opening Incredibles toys roller coaster for everyone major (that’s his favorite movie) involved . Some days, his surgery in and blowing bubbles parents would go home February 2016, outside . It’s amazing to from spending the day at and has since had think how far he has come the hospital, and Aaron three others including in three short years of life . would be thriving in his a cranial vault, and two to In June 2015, his parents, blood sugar levels and fix hydrocephalus . Every Araceli and Matthew, temperature; they would single surgery he has gone along with older brother come back the next day to through, he has bounced Aiden, were quite find out those levels had surprised when he decided plummeted throughout the he was ready to meet the night . Doctors and nurses world . No hospital bag had couldn’t quite figure out been packed, no maternity what was going on with pictures had been taken, Aaron until day 10 . ccakid 2 ccasupersib meet aiden kimberlin

uper Sib Aiden in the middle of the living sMatthew Kimberlin room . has a smile that can light Aiden’s heart and loyalty up any room . He lives to toward his brother is entertain, whether telling unrivaled . Even though jokes, or being the center Aiden has had to walk of attention . He loves through four major to bring joy to the ones surgeries with Aaron so closest to him, and to far, he has not let the people he meets . changes in situations bring Aiden is seven years old, him down in any way . He time in the NICU, Aiden camping, learning about and is entering the second always helps with surgery would put stickers on the safety and survival grade in August . He excels prep, keeps his mom tops of Aaron’s bottles so skills, and helping the in every subject in school, and dad calm during the his mom could take them community . Recently, he and is enrolled in a dual- surgery and recovery time, to the hospital . When was promoted from Tiger language program . He visits his brother in the Aaron came home from Cub Scout to Wolf Scout . has been learning how hospital, and makes sure he the hospital, Aiden loved Some of Aiden’s favorite to speak, read and write has everything he needs . to cuddle with his brother, activities include playing in English and Spanish From the time Aaron and always exhibited a video games on the Wii since Kindergarten . Even was born, Aiden has been gentle heart toward the and iPad, and collecting though he succeeds in all helping mom with his little new family member . toys, such as bobble heads his subjects, his favorite is brother . When Aaron spent This and McDonald’s Happy Math . Super Sib Meal prizes . After working He adores his younger joined hard at school all day, brother, Aaron . Even Boy Aiden loves to relax by though there is a four-year Scouts watching his favorite TV age gap between the two, about a shows, like Duck Tales, or that hasn’t stopped Aiden year ago . tuning in with his younger from opening his heart and He has brother to watch anything making his little brother thrived in on Disney Jr . his best friend . You can his pack often find the two brothers Join the Kimberlin family earning wrestling or holding an August 16 in Dallas for badges, impromptu dance party Family Night Out! 3 meet megan brown ccaadult Life Is an Adventure! rom my earliest memories, I have always been on fadventures . Whether it was to the hospital to have surgeries, or travel throughout the to visit relatives . I was born with a benign tumor called a hemangioma . When I was a baby, doctors tried different treatments to stop the tumor from growing on my face . Finally, it was an experimental drug, at that time, that saved my life . The tumor faded away due to the drug, but the next step in my craniofacial journey was to have 21 surgeries throughout my childhood . Despite having that many surgeries, I still had a pretty fun childhood . I am the youngest of four kids . I have two older brothers and a twin sister . My twin sister was not born with a facial difference but has been a built-in friend and protector for me throughout my life . I have always looked up to my three older siblings, and wanted to do the sports and hobbies they did . Since I was 5 years old, I have played many sports . When I was a kid, soccer was my favorite to play, but now as an adult I love running long distance and shooting hoops . Two years ago, I ran my first half- marathon . The life skills and drive I learned from my siblings and playing sports have carried me in other areas of my life . In August 2017, I took a bold step . I offered teachers via Facebook, whose classes were reading Wonder, that they could Skype me, a real-life Auggie, free of charge . The response from it has been nothing short of incredible! As of right now, I have shared my story more than 180 times across all 50 United States, plus 12 other countries across five continents . One thing I have learned from this experience is that when we focus on the similarities, more than the differences, life is more enjoyable and better for everyone . I truly believe God has made me this way for a reason, and through Him I have been able to turn my pain into purpose . Through all the highs and lows in life, the scars on my face are just a roadmap to my past, but they do not define my future and the adventures yet to come .

Megan (right) and her twin sister, Sarah (left) 4 Spreading the CHOOSE KIND movement takes teamwork, dirt and sweat! garden tour and tips raises over $10,000 for cca! By Virginia Wiese

hen my sister-in- that are faced with the wlaw, Rose Wiese, challenges of craniofacial decided that she wanted differences . Every single to do a fundraiser for day, CCA is working CCA, her first thought to spread kindness . was to somehow use her And, if you support an passion for gardening as organization whose the starting point . What message is spreading evolved was a two-evening kindness, it’s a powerful event this past June in the message for the whole gardens of the home she world .” shares with my brother, To help with the success Mike, and their son, Nick . of the event, Rose counted This little idea blossomed on a group of friends into a fundraiser that and family who helped netted over $10,000 for her with everything from CCA! invitation development, Rose wanted the Garden and spreadsheets for Tour and Tips event to be tracking RSVPs, to the not only a fundraiser, but design for the T-shirt, and away . That same week, received by continuing the also a chance to educate hands-on work in the Rose’s oldest brother, Pat, kindness, and the Garden those attending about garden . One friend, who is also died unexpectedly . Tour and Tips was a perfect CCA . She says, “Garden also an avid gardener, even With the Garden Tour opportunity . Thanks to the Tour and Tips was a special made beautiful cement cast and Tips less than a week support and love of family opportunity to talk with leaves that were a huge away, Rose questioned and friends, the event was folks about CCA and what fundraising hit . whether she could still a big success!” the organization has meant The week before the host a successful event and Thank you, Wieses, for not only to our family, but event, Bill, a close family contemplated cancelling . opening your hearts and to countless other families friend, tragically passed But during this time, she home to help all of our also realized the powerful CCA family . “ripple effect of kindness .” “So many people came Rose is passionate about out to share stories of how God and her family. She Bill’s and Pat’s kindness and Mike have been touched their lives . And married for 34 years and they, in turn, shared of are blessed with four great themselves, and showed kids and a wonderful amazing support and daughter-in-law: Arch, and kindness to us during his wife, Stephanie, Nick, that sad time . It was truly Elizabeth and Dan. Rose is humbling… and also also passionate about CCA, inspiring . I wanted to honor where she serves on the the ripple of kindness we Board of Directors. 5 7th annual morgan meck invitational benefiting cca

them for continuing special thank you is also to support Children’s deserved for Christine Craniofacial Association Condino-Mecklenburg, and for helping all her Shawn Craig and Holly friends from CCA; she Jaenichen for providing then encouraged them to incredible golf and hotel “spend more money for experiences for the auction, her friends at CCA!” Erica along with TaylorMade Mossholder and Jono Golf for allowing CCA to Lancaster truly moved the benefit from its Charity group with their personal Purchase Program . accounts attesting to the Coto de Caza Golf amazing work CCA does and Racquet Club was for CCA Kids and families . the host venue, and all First time participants out-of-town participants Bryant Michels and stayed at the Laguna Cliffs n April 18th and imbedded in the minds of Joe Ploytycia won the Marriott Resort & Spa oApril 19th, the all participants . overall championship, in Dana Point, California . Mecklenburg family We also had the and Maria Amelio Private dinners were held hosted the seventh annual opportunity to honor Chris extended her undefeated at Hanna’s Restaurant Morgan Meck Invitational Jones, who has partnered record as Ladies’ and Bar in Rancho Santa benefiting Children’s with CCA to educate 10,000 Champion; however, the Margarita and at the Vue Craniofacial Association . students in the Capistrano true champions of the Restaurant overlooking There were 40 golfers from Unified School District tournament were our the Pacific Ocean in Dana across the country, and about the importance of CCA Kids who inspired Point, and transportation approximately 70 people acceptance and inclusion . this small group of friends, was generously provided who attended dinners and Her work included making corporate sponsors, and by ACCESS Destination participated in a significant Wonder part of the auction participants to Services . way . The guests also district-wide 6th grade contribute over $120,000 CCA and the included four amazing curriculum and inviting to benefit Children’s Mecklenburg family would CCA “Kid” attendees: Peter Dankelson to bring Craniofacial Association . like to thank all of the P.J. Reynafarje, Keegan Auggie to life in the eyes A special thank you goes volunteers, participants, Strogatz, Michael Brown, of these students through out to our Platinum contributors and auction and Jono Lancaster . This a dozen “Real Life Auggie” Level Sponsors: Crum & item donors who have gave our participants the presentations per year . Forster Insurance, Bobby make this a memorable opportunity to appreciate We are so grateful for and Kristen Baillargeon, and meaningful event . the lifecycle of CCA Kids our committed friends EverGuard Insurance, from newborns, to active and neighbors who join SES Insurance, Blair and and engaging toddler, us for this two-day event Shelley Schrum, Maria to a highly accomplished that continues to raise the Amelio, Greg and Donna activist in the Treacher bar each year . Morgan Bonnell, Robert and Collins community whose Mecklenburg welcomed Karen Reader, and Kevin speech will forever be all participants and thanked and Jennifer Trapani . A 6 7 retreat recap, from pg 1 We would also like downtown area with fun to thank our incredible dining, shopping, and the keynote speaker, Ben newly “dropped” rentable Kjar, who positively scooters and bikes for the charged, inspired, and entire family . The majestic rallied our families to mountain views were an proclaim themselves added bonus, as was the “Victors, not Victims!” slightly cooler-than-Dallas He and his wife, LaCol weather! joined us all weekend, Each year we strive to meeting our families and improve upon the years connecting with the kids . prior, and this year we Jono Lancaster from introduced some new Love Me Love My Face Foundation and David efforts, including texted was the “Camp Care” needed to be explored, Roche, from Love at communication reminders, room, lovingly envisioned, and we are immensely Second Sight, also held and also a morning Zumba created, and staffed by grateful for her work party . The biggest laugh, Bethany Johnson, with over the entire Retreat however, came one month Thursday assistance from to make this calming, before Retreat, when Christine Holding . We loving environment for our everyone received a text felt there’s long been families . encouraging them to Rise a need for some extra We also had some and Shine and Zumba support while our families amazing sponsors this with CCA Dad Jerry! experience the highs of year, who graciously Even though it was a little Retreat, but also anticipate helped us plan and premature, when Saturday the lows of returning home host our 10th Annual morning finally rolled … a place not nearly as Craniofacial Symposium . around, and we actually amazing as “Planet CCA,” We would like to thank got to work out together, it a term coined by Teresa the following experts and was a blast . Joy Dyson . Bethany professionals from Primary Another addition that stepped up and created a Children’s Hospital, Lone completely wowed us true sanctuary—a place of Peak Hospital, and the rich and important sessions respite and warmth—in the Craniofacial Foundation that encouraged the hotel . With soft lighting, of Utah . audience to own, claim, encouraging posters, and • Rodney Schmelzer, MD love, and tell their stories . candlelight, Bethany • Barbu Gociman, MD CCA family members welcomed individuals • Faizi Siddiqi, MD Rose Seitz, Stephanie into the room to talk • Jonathan Skirko, MD, Cooper, Deena Dyson, about things they MHPA, MPH Nancy Merrill, Harlena were feeling and • Laura Rodriguez, CPC, Morton, Shaun Vysocky, experiencing . “The CPMA, CMC, CMIS Dede & Peter Dankelson Feelings Lady,” as • Juliana Powell, LCSW, and Rasheera Dopson she calls herself, CCLS also participated as panel helped many kids • Alina Schmelzer, LCSW, members, rounding and adults get in CCLS out an informative and touch with parts • Alvin Stosich, MD, DDS empowering Symposium . of themselves that 8 they took pictures with our families and mingled with the crowd . While connections were being made, we had a magician set up and give a fun show to our younger attendees . Friday morning started bright and early with breakfast, and then the families gathered for Group Meet-Ups, one of our most popular additions to Graciously, our exhibitors Paula Guzzo, Melissa Melanie Yarbrough, all the Retreat . During these assisted in completing our Jurek, Ed & Amy Kern, of our raffle ticket sellers, groups, families were Symposium efforts . We Jennifer Kilmer, Sarah and everyone who brought able to meet others with are so grateful for their Klinger, Jill Laufbaum, raffle baskets . like or similar syndromes/ time, information, and fun Eric & Jen Lucas, Doug We kicked the retreat craniofacial conditions, activities they provided . & Janis Macut, Melissa off Thursday evening as well as others around Thank you, Primary McGowan, Johnny & with a Taco Night and a Children’s Hospital, Jessica McMahan, Bill & gorgeous mini-concert by Lone Peak Hospital, KLS Christine Mecklenburg, the One Voice Children’s Martin, Craniofacial Nancy Merrill, Harlena Choir . One of our amazing Foundation of Utah, Morton, Bobbie Quiroz, CCA Teens, Hannah American Cleft Palate Kevin & Erin Richmond, Steinagel, is a member Craniofacial Association Kristen Roberts, Jaci of the choir . The choir (ACPA), Craniofacial Samhammer, Mark & performed several of their Foundation of America, Laurel Sanborn, Rose most popular songs, and CCD Smiles, CranioRehab Seitz, Patricia Simon, roused us all with hits from and ConnectMed . Kathie Steinagel, Haley “The Greatest Showman,” And last but not least, a Streff, Heather Sutton, especially “This is Me,” HUGE thanks goes out to Shaun & Courtney which turned out to all of our amazing families Vysocky, Tanner Walker, be the anthem for this their same age . It was so who volunteered their time Tosha Walker, Dorina year’s Retreat . Following wonderful to watch the during the symposium, Watkins, Andy & the choir’s performance, families gather, and while registration, and retreat: we hope to make next year Sharon Allbright, Dave a more intimate experience, & Liz Anderson, CJ & the groups’ enthusiasm this Bette Barbalaci, Lisa time was hard to contain . Bowers, Jerry & Virginia There were lots of games Carchi, Christine Clinton, and get-to-know-you’s, and Stephanie Cooper, next year we are already Bernice Crimaldi, planning to deepen this Kristine Dale, Josey experience, which so many Daley, Dede Dankelson, people believe to be crucial Nancy Dau, Rasheera to the Retreat weekend . Dopson, Whitney Dunn, Thank you, once again, Deena Dyson, Bob & see retreat recap, pg 10 9 retreat recap, from pg 9 During Family Night the how to play several This is a time-honored basket raffle race was on! casino games, but more tradition and we appreciate to the volunteers who Families from across the importantly, they had their you sharing your smiles for it . helped during the meetings United States and beyond own special night where Saturday evening, after and for all the attendees’ brought baskets of goodies they could mingle with an afternoon of some fun patience and participation from their regions and others their own age and in the sun at the pool, as we accommodated hometowns for CCA to support one another . This everyone came together for everyone! raffle! These baskets held year we featured some our dinner/dance . Before Following the Group everything from sports pretty sweet prizes, too! kicking off the dancing, Meet-Up’s, the families souvenirs and memorabilia, We appreciate all the help we showed a crash edit went off on their own for to local food specialties, that went into this special video of the weekend that lunch and gathered back and some boozy goodies, event . Brady Dunn put together . together for our Talent too . The generosity of our As I previously It was a fun moment to Show, or as I like to call it, families never ceases to mentioned, Saturday reflect and see snippets “CCA’s Got Talent!” This amaze us and once again, morning we gathered for of all the fun we’d just year there was dancing, we already have ideas how an energetic Zumba session had . Special guests at hula to keep this popular activity held by Jerry Carchi . I dinner included our local for next year, but improve attended this session and surgeons and their wives, upon the execution! Thank let’s just say, he got our including Dr. Rodney you for your generous heart rates up! Everyone and Alina Schmelzer, baskets and your feedback . had such a wonderful time, Dr. Larry and Brenda While parents were and Jerry has graciously Sargent, and members of buying raffle tickets, and volunteered to do Zumba the cast of Wonder who stuffing them in the raffle again for us next year! joined us during the entire bags, the teens were After Zumba, everyone weekend, were recognized . swimming together in the gathered in the ballroom Bill Mecklenburg called hooping, main pool and making for a group photo! It’s quite singing, comedy, new friends . Teen night a task gathering nearly gymnastics, piano solos, wouldn’t be possible 600 people for a group and more! To see our kids without the help of our photo, but with the help of open up and share their chaperones each year . our amazing photographer, talents—and cheer each Thank you Erin Sutton, Brady Dunn, the direction other on—is why we do Janna Emfield and of Andy Yarbrough, and this event . We love the Dennise LeBaron for the orderly lining up of our saying, “Let’s root for each making this year’s teen families, we got it done, other, and watch each night such a success! and it’s such a powerful other grow ”. That’s the After dinner, the CCA photo! THANK YOU to CCA way! Adults headed to Casino everyone who participated . Night where they learned 10 Green Day’s “Time of Your Life” song . Once the performance concluded, the dancing began and our DJ brought the house down with a great mix of current hits, classics, and our special Retreat hit favorites! Sunday morning is always bittersweet . There were lots of hugs, promises of up Jason, Christina, staying in touch and, as Jacob, Emma and Erica always, a few tears . We Tremblay; Megan always relish meeting the and Millie Davis; and new families and catching Greg, Donna and Elle up with old friends . There McKinnon on stage, and is no magic quite like officially adopted them into Retreat to warm the heart the CCA FAMILY! Their and soothe the soul . It is presence all weekend was the booster shot of joy we truly magical, as everyone all need and our shared community helps us envision a world where we are all accepted for who we are, not how we look . We hope everyone had the TIME OF THEIR LIVES! felt incredibly honored to You too can get in on have them in attendance, the fun next year! Don’t and loved meeting these delay, registration is kind, genuine, authentic officially open for the 2019 souls in person . We hope Scottsdale, AZ, Retreat, to see them every single June 27th-30th, and we year from now on! We hope to see you all there! then insisted on an encore And be sure to read presentation from our about a first-time retreat Talent Show . Our very attendee, Tristin West, own Peter Dankelson and her family’s experience . and Bianca Moon joined Annie Reeves together to perform Program Director 11 12 13 first-time retreat attendees

e are the West complex children often wfamily . Our son have the opportunity to Jayson has spent nearly 5 attend conferences and of his 6 years of life living bond with those with with an undiagnosed common experiences . We craniofacial syndrome . desperately wanted this Through the generosity type of support . It was of a lab, we were finally something we always able to obtain Whole dreamed of . Exome Sequencing which When we learned of discovered a mutation on the Children’s Craniofacial the gene MN1 . We later Association and the family with the other craniofacial it . It’s a mutation on gene learned this was a newly retreat, we knew we had families? MN1 .” discovered craniofacial to attend! What a crazy We were welcomed with Doctor: “MN1? Actually, gene and there were a few coincidence—it was in open arms and started I am familiar with it .” other MN1 patients like our area this year, Salt having great conversations Me: “Really??? It’s so Jayson! We finally were on Lake City . Unfortunately, with families the second rare, I really didn’t think the verge of a diagnosis!! the registration date had we arrived . One family anyone would know There are many passed . I reached out to told us about a research what it was . It is currently frustrations and heartache Annie and got placed on study being done by Face being researched and that come with living a the waitlist . I had no idea Base in a nearby room we were told a paper life undiagnosed . Without that her email inviting us and encouraged us to should be published any a diagnosis, we didn’t to attend the retreat would participate . We walked day identifying a new have a “family ”. We literally change our lives . in to see a doctor and his craniofacial syndrome .” lacked a support network We woke up the first assistant with cameras and He looked both confused with shared diagnoses, morning of the retreat with equipment; they would and intrigued . procedures, surgeries feelings of excitement as be used to take pictures As we filled out some and struggles . We felt we were about to embark and measurements of paperwork, his voice softly alone . Other families with on a new experience . We facial structures to store said . . medically were thrilled, but nervous in a database and help Doctor: “So I think it as we wondered how diagnose children with was actually my paper that much we might craniofacial syndromes . discovered MN1 in 2011 .” have in common What an amazing Me: “What????” with people opportunity to be a part He had my full and with various of this study! Surely, we complete attention . craniofacial would be the first MN1 Doctor: “Yes, I authored diagnoses . family in the database! the paper on my patient . Certainly The doctor asked us what She had tumors and NF2 we would Jayson’s diagnosis was . but I knew there was more be the Me: “It’s an ultra-rare going on with a craniofacial only MN1 craniofacial syndrome syndrome so I . . ” patients; without a name . He’s only Me: “What is your how much one of 11 in the world, so name??” would we I doubt you’ve heard of Doctor: “Pedro have in common Sanchez.” 14 Me: “Hold on ”. paper in 2011 suggested dared to fantasize about . I I grabbed my phone and MN1 was craniofacial unexpectedly met the man opened up my bookmarks . gene and a geneticist in who DISOVERED Jayson’s I had the only paper ever Boston decided to build on craniofacial condition . written about MN1 saved your research by studying I saw the doctor’s eyes on my phone . I pulled it up Jayson and five other welling up as he searched and zoomed in . children in the world with for words . Oh . My . Gosh . Sure enough, it said Pedro Sanchez . I lost my ability to talk . I true to meet the man who got dizzy and light headed changed our lives, but we as a warm feeling came learned that this moment over me telling me we were completely changed his life here for THIS REASON . too . I grabbed my mouth as I Dr. Sanchez: You are let out a quiet sob . I took the reason I came today . a deep breath and looked There is a higher power this amazing doctor in the behind this . I was meant to eyes . Tears streamed down meet your family today . my face as I spoke a mile a No doubt about it, doc . minute . I could not contain No doubt . my emotion . We experienced a true Me: “Do you know miracle, and I’m certain how much you mean to this mutation . We got a Dr. Sanchez: “I have many lives will never be us??? You have changed diagnosis because of the never met another MN1 the same because of this our lives . My son has a work you did . Do you family . Ever . I didn’t know connection . Next year I diagnosis because of you . know your work means about the current research don’t think we will be He was undiagnosed for everything to us? Without paper in progress . I didn’t the only MN1 family in five years . Our geneticist you, we wouldn’t be here! know if I would ever meet attendance . The doc and didn’t think the MN1 Do you even know that?” another MN1 patient .” I will make sure of it! The mutation was clinically Tears just kept coming . I started crying again . retreat connected us not significant, but we showed I couldn’t control them . I Not only was it a only with life-long friends him your paper! Your was living a dream I never complete dream come and a new craniofacial family, but also with this doctor who has vowed to be a part of our lives forever . We will never forget the CCA retreat of 2018, the event that changed our lives . Thank you to all who made this possible . If you know another MN1 family, please have them contact us by email at tristinwest.littlejsjourney@ gmail.com 15 community together to heard about Wonder being and acceptance . PEP and pep recap raise awareness is through released in theaters . She the Cronins spread the the Rare Disease Day felt Megan’s story and the word about the event to hanks to the Cronin at the Movies . Angela message of kindness were the legislators, government family of Saratoga t Cronin attended the a perfect fit for 2018’s Rare officials, and general Springs, New York and first two movie nights in Disease Day at the Movies . public . On the day of the the Patient Experience 2016 and 2017 . Angela She decided to ask PEP’s screening, the winners of Project (PEP), CCA was interested in the event planning committee the poster contest were benefited from one of our work that PEP was doing if they would be willing revealed during a reception favorite types of events, because the events were to plan a screening of the and exhibition before the one that raised awareness “well supported, quickly movie . She also hoped screening . Presentations and funds at the same becoming an annual must- they would share Megan’s were made by U.S. time . On February 28th, attend for many people in inspirational story . She Congressman Paul Tonko PEP and the Cronins the area .” Her daughter, requested that funds from and Saratoga Springs celebrated the third annual Megan Cronin is an the ticket sales be donated Mayor, Meg Kelly, Rare Disease Day at the amazing twelve-year-old to CCA . The planning honoring the students’ Movies, which raised over girl, who happens to have committee took the movie’s messages of kindness . A $7,000 for CCA . been born with a facial message of kindness a step special video message Each year, Rare Disease difference, gene mutation, further, transforming it into from Jacob Tremblay Day helps raise awareness and brain abnormality . a movement of kindness in was played for those in for patients who suffer Megan loves soccer, which the entire Saratoga attendance at the theater . from conditions that school, and spending time Springs community could He told the sold-out crowd affect fewer than 200,000 with friends . Her zeal for support and participate . to “be a little kinder” and people in the United life earned her the New In the months leading remember “that kindness States . PEP strives to bring York State Attorney up to the screening, costs you nothing, but pays patients and professionals General’s 2017 Triple “C” hundreds of students off beyond measure .” from the medical and Award, recognizing the from five schools in New The community of pharmaceutical fields Courage, Character, and York’s Capital Region were students, teachers, and together to help find Commitment she displays asked to submit entries community leaders made treatments and cures for each day . to a poster contest that this particular Rare Disease these individuals . Soon after attending the expressed their personal Day at the Movies event One way they bring 2017 screening, Angela understanding of empathy very special . The children patients and the 1616 shared their beautiful families affected by facial words and images with differences .” the people of Saratoga CCA is very grateful Springs . The artwork and for this large donation of messages in the posters $7,000+, because it will were inspiring . Angela says help our community of none of this would have children and adults born been possible without the with facial differences travel “teachers who served on to receive the medical the planning committee, treatment they need, and Julie Vanderhoff, connect with other patients Maureen Niesz, Barbara on a similar journey . One Wersten and Kristen community helping another Bobear .” is a fine demonstration of PEP President and empathy in action . Founder, Dan Bobear, commented, “In a world too often marked by conflict and indifference, these students remind us all how powerful it is to demonstrate empathy . We’re proud to have a sold-out event and hope the funds raised will make a difference in the lives of

17 ely potter: good news

ow many of us can say his impassioned plea for hwe are award-winning nonviolence . writers? Well, CCA Kid, Ely Ely, we hope to see more Potter can now call himself work written by you . From one after writing an essay one writer to another, keep about The Future of Peace up the good work! for the International –Kara Jackman Essay Contest organized There are many fabulous by the Lions Club . Potter things that the human eye won $5,000 and a trip to Does this tell you peace can can physically create. It is can see and our hearts can New York City where he be in anyone? created within your heart, feel. Many of those things was honored at the United brain and actions. Peace can be the darkness of pain It is time to let peace guide Nations . Truly incredible! can be quietness, calm, and and depression. Most of us not only in catastrophic His mother Jamie breathtaking. those feelings come from times but on a day to day wrote to CCA to tell us chaos and destruction. basis. Many people think Everyone who is reading that Ely said he wanted But know this now, the peace is like what we see this drop your blood boiling to send his gratitude to eternal feeling we know as in superhero movies. A fists. If we all can have the organization . Ely says, peace can be stronger than superhero isn’t just a man clean hands in this world, “I want to thank CCA, those negative feelings. with laser vision but are everything that came out all those people always When there is peace no ones that bring peace and of Pandora’s box would made me feel like a darkness or evil will corrupt sweep away the danger be sucked back up except normal person ”. Ely says, our world. Earth might that surround our world. for hope which all of us “I especially want the kids hold inside our hearts. seem chaotic and deadly Martin Luther King, Jr. is like me to know they can With weapons gone with all the murders and one of the most flawless really achieve anything they and hearts brighter than natural disasters going on examples of a peaceful set their minds to . And heaven itself, we will all across our planet. People figure. He says ”I have just because other people enter a new world; a world are fearful; people are a dream…” more times call you different, different with not only peace but drained out; but how than anyone. Well, I have is sometimes a very good nonviolence. I might not be do we overcome these a dream to persuade the thing to be!” in that new world but I can obstacles? I’ll tell you... readers who are listening First the Potters found see it through my crooked with peace that many of us to my words that peace can out that Ely had won the eyes and my foggy glasses, have stored somewhere in never be passed by. Peace district level contest, which and most of all I can feel our DNA. Many brave men is the strongest weapon. pushed his essay further it in my heavenly heart and women have reached It may not fire bullets but along to the state level in because as I said, “Peace out to the troubled ones it can change the most Delaware . Guess what, he isn’t an object that you and pulled them out of the powerful substance in a won that too! Days later can touch; it’s something deadly waters and into the villain or a normal average the family was informed you can feel.” This is how I peaceful light. Many people Joe; their hearts. Peace can via email that he won the see peace in the future as helped those who were also spread out of the blue, Lions International Essay a nonviolent world. Even in great danger by giving thus it can be created. In Contest . though I can’t see well them fresh food, games, fact, you are creating peace Here is the text of Ely through my two eyes I can friendship and helped them right now. Do you see? Potter’s essay on peace and see it clearly in my heart. back onto their feet again. Peace isn’t something you 18 wonderkid speaker training

e, at CCA, are so humbled to have an woverwhelming interest from schools and organizations requesting our CCA Kids and Adults to go and speak to their students . Teachers and students are eager to learn about our CCA family’s personal craniofacial stories and how your experiences have shaped you all miles for cca kids poker run into the amazing and inspiring people you are today . Due to the high demand to share, we decided to create the e are so grateful for another great year of the Miles CCA Speaker’s Bureau . The Speaker’s Bureau’s goal is to wfor CCA Kids Poker Run, organized by Lewis unify the message and content presented to schools when Boykin and the DWMC riders! Once again they showed representing CCA . All speakers within the Bureau receive up on a sunny day, May 19, 2018, to ride motorcycles and free public speaking training and formal education from share in the love for our craniofacial families . The guest of honor, Rob Gorecki, accompanied the ride with Greg and professionals . This qualifies our speakers to be equipped Jill Patterson . We are so excited that the fundraiser netted with the tools and confidence needed to speak in front of nearly $3,000 for CCA! Thank you to the Pattersons, an audience . Lewis, Rob, and the generous sponsors: Adkerson, Hauder & Bezney, P.C ., 1st Call Recovery LLC, Acacia Insurance Managers, LLC, and Praise Hymn Fashions .

This will be the first year for The Speaker’s Bureau to be implemented, and I am very excited by the interest I have received thus far! If you are interested in sharing your own experiences, I would love to help guide you through the process, and be your go-to person for any concerns or questions that may arise along the way . We value all our CCA speakers’ efforts in helping us spread the message of #ChoosingKind across the world . It is not too late to save your spot for the upcoming virtual trainings we will be hosting . There are no restrictions based on locality, age, or any other factors . However, if you are a child under the age of 14 years, we require a “family certification .” This means an adult will need to accompany the child to all the events, and therefore undergo the same training process . If you have any questions or concerns, feel free to email me at [email protected] . I will be glad to help!

-Khadija Moten, Outreach Director

19 bella, from page 1 relate to the “knowing” life after all—to light a fire by the county to place of what surgeries were under me to do things for her into pre-school and necessary, but also Bella’s future . kindergarten . “dreading” the day of Then, glimmers of hope Despite the challenges handing your little started showing up . When she had to face, I told child to a gowned we went to the pediatric myself to be strong for stranger . It still cardiologist to check on her her no matter what . She puts a lump in ASD, he said, “Well, all her attended “special pre-k” my throat even valves are strong and guess classes when she turned 3, thinking about what? The hole has healed and then on to “special k” those moments . on its own!” Then, the for kindergarten . Despite Bella had 10 pediatric neurologist told her orthopedic issues, she doctors right us, despite her toes being was progressing and they from the start, and fused, she could be a prima started to mainstream her . diagnoses included Apert ballerina if she wanted The plan was to place her syndrome, Atrial Septal to! When she had her in a regular classroom for bound, near blind and yes, Defect (ASD) (aka: hole in front and back craniofacial the second half of the year . dumb . I looked at her and the heart), vision issues, surgery at 8 and 10 months As she approached first couldn’t believe what she bladder reflux, etc .—too respectively, she healed well grade, I heard of an Arts just told me! How dare she many to remember! I was and got through her thumb Integrated Elementary tell me the limitations of so overwhelmed with release like a champ! She School that was opening my own daughter! I was so appointments that I was had gotten through her up close by . It was in Las furious, angry at the world, seriously on the verge of first year of life healthy and Vegas, so the only way depressed and felt like life a nervous breakdown . whole . She couldn’t speak to get in was to enter handed me a raw deal . But, “How am I going to do yet, but through these the school’s lottery with it was from that moment this?” or “Why me?” were accomplishments, it was thousands of other parents, on I knew my life’s resolve questions I asked myself . like she was showing me and pray like mad . I was going to prove that I would beat myself up that she was going to be received 3 emails once the lady utterly and absolutely and wallow in self-pity all okay . Her smiles and happy lottery closed: The first said wrong . day . I wanted to hide from demeanor told me she was she didn’t make it, then Both my husband and the world, even leave this a victor, not a victim . What the next two said she did . I come from the medical planet . an inspiration! I jumped on getting her field . Collectively, we have With the help of IEP paperwork faxed to the worked at hospitals in Early Intervention Services Hawaii, Las Vegas and New (NEIS), Bella was assigned York City as respiratory a case manager/social therapists . We’ve worked worker at 1 month old . We in emergency rooms and have to thank the NICU intensive care units in adult, nurses at my husband’s pediatric, and neonatal hospital for telling us settings . However, when about this program . it was our 8-month-old NEIS would follow Bella’s as the patient, we found But then I remembered learning progress from 0 ourselves in the opposite the voice of that lady and to 3 years old and then role of being the worrisome my resolve . My paradigm the Clark County School parents . Needless to say, shifted from anger to District (CCSD) would have we didn’t like it . I’m sure courage . Wow, maybe that her transition into Child a lot of CCA parents can lady had a purpose in my Find, a program offered 20 just the proverbial “slap in the face” that I so needed . Either way, it taught me to accept and love who I am, a proud mother of a Super Special Child, not a “special-needs child,” who has helped me to grow up, be more spiritual and grateful every single day . Think about it . Through our children’s journeys, we book for me to read . Her have touched, seen and unconditional love for the felt the true things that three of us has always been matter in life: unconditional my rock . Even as I approach love, laughter, the miracle 50, my mother remains the of healing, and patience . nurturer that I aspire to be So who’s the real child new school that night . We Her journey in life (so for my Bella . She dug in in my situation? I am . were so glad she got in and far) has humbled me many her personal library, which As parents, we think we haven’t regretted it since . times and taught me I often call “the abyss,” are the masters, or the Little Miss “Smiley” Bella patience, unconditional one day and came out with bosses, but in our collective has gotten through her love, courage and true, a book that talked to me, situations, our children are nine surgeries like the little “dig-deep” strength . The Gifts of Imperfection: actually the masters . They soldier she is—four for her Look at her now, still Let Go of Who You Think “do” because that’s the skull, three for her fingers, smiling, singing, dancing, You’re Supposed to Be, and only way they know how, one for her bladder, and using computers and Embrace Who You Are, by and we parents get to learn the recent one last year, to smartphones, doing Brene Brown . If you haven’t the true meaning, the true smooth her temples and schoolwork, being read this book about essence of life . What a forehead . She still has a complimented many times Wholehearted Living, I beautiful thing! few more planned as she for her handwriting, and invite you to do so . goes through puberty . enjoying our family sport, Personally, it was an “a- I think the hardest archery . Wow, she has ha” moment, for sure . Call procedure for her was come a long way, and will it a spiritual awakening, or when she had distractors in only get better! What did with hardware sticking out that lady say again? of her temples and back of So now my response to her head . My husband had parents who have asked to turn the two screws at me the question, “How do the back of her head 1 ml you deal with all of it?” My at a time, a task I just could answer is always the same, not do . I know there are “You just do .” My mother, many other children/adults my spiritual mentor, is an out there that have dealt avid reader of all types of with so much more, and books . I swear she’s a part- my heart truly goes out to time magician because it them and their families . seems no matter what I’m going through, she has a 21 delaneys fishing trip

n March, Central Florida place in that competition inative, Delaney Cunha, and the rest is history . and her Mom and CCA The money she won Board Member, Kelly, fishing went right back to enjoyed a day on the high kids in need, this time to a seas learning how to fish camp for kids that suffered with Chasten Whitfield . severe burns . Chasten also Chasten, (AKA “Chaz”) began speaking out at has always loved fishing schools about bullying and and philanthropy . She sharing the importance of has been able to combine choosing kindness towards her two passions through others . her Chastenation (www. In 2016, her two worlds chastenwhitfield.com), of doing good and fishing where she introduces collided again . Chasten children that face medical recounts the encounter challenges to the sport of that started the work that fishing . she is currently doing, “I Chasten’s charitable life did a fish camp off a pier began at the tender age of during the summer of 2016 five, raising money for St . and met a little boy in a Jude’s Children’s Research wheelchair who had never Hospital . Each year from been on a boat or fished . kindergarten to fifth grade I was determined to help she held a garage sale; in him catch a fish and when those six years she raised he did, he did donuts in $6,000 for St . Jude’s . his wheelchair screaming, In a cruel twist of fate, “I caught a fish!!!” That she says, her brother was feeling of joy, and the self- diagnosed with “a rare esteem that little boy just tumor in his hand, so it was gained, was unbelievable .” my first lesson in things At that moment, Chasten coming full circle .” As she knew she had found was managing life with her her calling . The boy and sick brother, she entered Chasten became friends . junior high where she was She took him on her boat bullied for “being the only to go fishing . He was the girl who fished .” first in over 47 kids she Chasten says, “All my would introduce to the friends were doing all-star sport of fishing . Chasten cheer and I wasn’t the best sells t-shirts on her website cheerleader, so my mom to fund these trips on the talked me into a fishing water for kids with medical tournament .” She won first challenges . Yellowfin 22 to fight what they normally fight, they just have to fight for a fish… that’s it .” And fight for a fish was exactly what Delaney, born with Pfeiffer’s syndrome, did on a bright, beautiful day in the middle of March . Delaney and a camera crew went out on the Yellowfin boat to catch some fish . Chasten met Delaney after contacting her when Delaney won the Tampa- area parenting magazine cover contest—through the help of our dedicated CCA friends voting on social media . We love this story because it highlights the work that Kelly and boats helped build a boat are other small businesses making these fishing Chasten are doing to hearty enough to hold that sponsor her work expeditions possible . promote acceptance in a wheelchair and other or volunteer their time, Chasten wants the the world, but even more medical devices . There experience with the kids importantly to bring joy to to be “a day for them to the lives of kids . forget all their troubles . A day where they don’t have

23 madison peck then and now

and the more people can I would love to be able help . to work with nonprofit With my Gold Award, organizations, just like I wanted to do just CCA . I think giving back that . I found Children’s to others is the best way Craniofacial Association; to live . Kindness is most they were the perfect important, and through organization to help me education, kindness can be with my project! I created spread . y name is Madison Scout Gold Award . This is care packages for children CCA has helped me so mPeck and I was born a very difficult and time- going through craniofacial much, and I am so excited in 1995, seven weeks early consuming project . surgeries that included to be able to help and give with a cleft lip . My parents When brainstorming pillows and blankets . I back to them through a were fortunate enough about what I wanted to do, also created information college internship . They to have known about my and how I wanted to give pamphlets for their parents were gracious enough to difference early on in my back to my community, and provided them with take me on, and I’ve been mom’s pregnancy, and we I decided what I wanted information and contacts having a wonderful time were also fortunate enough to accomplish . I feel very to help them . CCA was so interning for them! To get to live near an amazing passionate about helping helpful to me then, and to see their impact and the hospital that specializes in others like me and I years later when I was close effort they put in to helping craniofacial differences . feel that it is my duty to to graduating college, I others is a wonderful and I was born in Dallas at give back . Learning that decided to contact them amazing thing . It inspires Medical City Hospital and your child might have a again . me to work hard so that I had amazing care there . Dr. difference can be a very I am graduating in can do work like this and Jeffrey Fearon and Dr. Ian intimidating and scary August from Stephen F. help other people in the Monroe have helped me time . I love meeting Austin State University, future . so much, as well as my oral families and talking to with a degree in Health surgeon and orthodontists them and showing people Science . With my degree, Dr. Jeffrey Genecov and that children who have Dr. Richard McFarland . craniofacial differences can Over the course of my grow up to have happy and twenty-two years of life, fulfilling lives . I have had nine corrective Living with a craniofacial surgeries on my cleft lip . difference, I have grown For me, this was all normal . up having to educate Surgery was very normal, people, and inform them to the point where I wasn’t about what a cleft lip is . scared of them . Medical People just do not have the City always did a great job knowledge and this is why of making my hospital stays I feel so passionate about enjoyable . spreading awareness to I have been a Girl Scout people about craniofacial for over twelve years . differences . The more When I was in high school, people understand, the I decided to earn my Girl more kindness can be felt, 24 CCA Staffers Christine Andler, Khadija Moten & Erica Mossholder have been happy to have Madison (second from left) help on special projects this summer. craniofacial acceptance month

his year marks the 14th year CCA will observe tSeptember as Craniofacial Acceptance Month (CAM) across the nation . Each year, CCA families, friends, volunteers and related support groups band together to widen the circle of acceptance for individuals with facial differences . The goal is to create awareness of craniofacial differences . If you would like to receive CAM info, please contact Annie Reeves . The info is perfect to share with local businesses, schools, libraries, hospitals and more! Also, it’s never too early to start planning a picnic! CCA will hold its 11th Annual National Picnic Day on September the 8th in Dallas . CCA families across the nation will hold events which will give them a chance to get together with other families in their areas, while promoting awareness in their communities . If you would like to hold an event, please contact Annie Reeves, and she can give you all of the details . [email protected]

25 dale family is a wonder

ack in January, Jeremy Dale visited Hugh Gregg bElementary school in Corning, NY to talk to 3rd, 4th and 5th graders about Wonder . Each year the third graders in this school work with the Corning Museum of Glass to make a custom piece of glass that one of the students designs . This year the design that was made was a very special Wonder piece drawn by Mercedes Ortiz . The glass piece was unveiled during Jeremy’s visit and will be on display at this school for all students to enjoy . After the school visit, Jeremy was extremely fortunate to visit the Corning Museum of Glass and work with two glass blowing artists to make an additional Wonder piece . The artists put Jeremy to work by gathering the hot glass from the furnace, rolling the hot gob into the colored pieces and assisting in making the facial features of the piece . The final product turned out great! A special thank you to the Corning Museum of Glass and the two artists, Erin Nelson and James Geekie, for their time and donation of the Wonder piece for the CCA retreat!

26 eremy Dale also visited the Brentwood School message . They created special T-shirts, and sold them jDistrict in Long Island and talked to students in grades throughout the school . The proceeds from the T-shirt sales 3rd through 6th . After his visit, the school wanted to were donated to CCA . Thank you Brentwood for your do something to continue to promote the Choose Kind generous donation of $1,120 to help more CCA Kids!

27 ere in Salt Lake City, together . Family, friends, hailey’s fan club hwe were so thrilled and neighbors are always to hear that the CCA interested in her because, Retreat was coming to despite the obstacles in her Utah in 2018! For our way, Hailey is outgoing and family, this would be the friendly . Hailey reaches out first time to attend with to people all day every day our 8-year-old daughter, on the phone, on FaceTime Hailey, who has Apert and Facebook, through syndrome . For those who texting, and in person . I haven’t heard, Utah was think this is the reason that, given the award for “Most as a collective community, Charitable State in 2017,” people were excited to which is probably why donate money to CCA our fundraiser was such on behalf of “Hailey’s Fan a quick and easy success . Club .” We more than doubled our Some of our biggest initial fundraising goal and donors were Charles and collected over $5,000 . This Laurel Barlow, Michael was enough to cover all the and Nicole VanBibber, audiovisual needs for the Dick and Marilyn retreat! Mower, and Sinclair Oil From the day Hailey Corporation . was born, she has had a As a community of way of bringing people Utahans, we’ve welcomed all of you with open arms . We hope you found our state to be as beautiful and generous as we do . We were so excited to share the weekend with our favorite group of people, in our favorite place, sponsored in part by our most supportive group of fans . With love, from the Sutton Family .

28 2018 retreat raffle

ach year, our CCA like quilts and blankets . eFamilies haul a little We had 82 baskets this piece of their home states year for families to bid on, to the Retreat for the and together, we raised Family Night Basket Raffle . $3,725! That’s a lot of Baskets overflowed with tickets… and truly, a lot of coveted items like touristy love! Thank you everyone T-shirts, local brews, for representing your flavorful regional snacks, towns, states, hobbies, and signature hats, bumper talents, and raising funds stickers, magnets, and also for CCA in the process . beautiful handmade items

29 testimonial calendar of events date event contact 2018 Aug 16 Family Night Out [email protected] 5-8 PM West Village Dallas Kendra Scott and Village Burger Bar “ 3699 McKinney Ave suite 105-b Dallas, TX 75204 Shopping, Family Networking, and Free Appetizers September 14th Annual Craniofacial [email protected] Acceptance Month (CAM) 214.570.9099 Nationwide 800.535.3643 Sep 8 Dallas Area CAM Picnic [email protected] 11 AM-1 PM with BBQ Lunch 214.570.9099 Sandy Lake Park 800.535.3643 Carrollton, TX Food at 11:30 AM, Free Park Entry, Entertainment, Free Ride Tickets Sep 15 Michigan CAM Picnic [email protected] 1-4 PM Ben Celani Pavilion at Bicentenial Park 35400 Seven Mile Rd. Livonia, MI 48152 Sep 15 PGH’s 2nd Annual CAM Picnic 2-6 PM 465 Scott Ridge Rd. [email protected] Harmony, PA 16037 Sep 21-23 12th Annual Children & Youth Conference by the American Legion [email protected] aleb was born March I had the great pleasure Sheraton Indianapolis City Centre Hotel Indianapolis, IN 46204 k13, 2010 . I had just to get introduced to CCA . Peter & Dede Dankelson are featured speakers turned 19 a couple months The process was so easy Sep 22 Alexa’s Craniofacial Awareness Dinner & Comedy Show earlier . He was born with and quick . They have benefitting CCA [email protected] bilateral microtia and helped us with multiple Antigua Event Center Riverbank, CA atresia . Being so young, expenses . They helped us Sep 28 11th Annual Links of Love Golf Classic I had no idea what that find a place to stay, put Firewheel Golf Park [email protected] meant, or how to handle food in our bellies, and 600 W Campbell Rd Garland, TX 75044 it . Eight years later, we have gas to get around 11:30 AM Registration; 1 PM Shotgun Start

have found a way to finally while Kaleb had surgery . Sponsors and Teams Needed get him started with his There are no words to Nov 2-3 Coto for the CURE ProAm Tennis Tournament reconstruction surgery . express how thankful and Coto de Caza Golf & Racquet Club 25291 Vista Del Verde [email protected]

It has not been easy . blessed we are to have Coto De Caza, CA 92679 We have gone to many gotten this help . The Sponsors and Participants Needed doctor appointments and surgery was approved with Nov 7-9 NAES Biennial Conference 2018 “ , GA [email protected] have weighed out all our such short notice, and CCA Peter & Dede Dankelson are featured speakers options . was able to help us get Dec 4 9th Annual NorthPark Center Gingertown Build Kaleb now has insurance, there . 5-8 PM NorthPark Center [email protected] and we are thankful his Thank you so much to 8687 N. Central Expressway Dallas, TX 75225 doctor is in network, everyone at CCA . Kaleb Watch as talented local architects build a Gingerbread as these surgeries are and his family really town into life, and hear Jono Lancaster speak! extremely expensive . appreciate it! 2019 Although Kaleb has – Elisa Flores Jun 28-Jul 1 29th Annual Family Retreat [email protected] insurance and I have a job, Hyatt Gainey Ranch 214.570.9099 Scottsdale, AZ 800.535.3643 the expenses are still a lot . 30 CCA WISHES TO EXPRESS OUR APPRECIATION TO OUR 2018Thank FAMILY RETREAT SPONSORS you! AND VOLUNTEERS SPONSORS: Thank you to our sponsors who donated funds or in-kind goods and services to make the 2018 Family Retreat & Educational Symposium, presented by Primary Children’s Hospital, truly, “The time of our lives!”

ELIZABETH TOON HEALTHEQUITY CHARITIES UTAH MEDICAL LONE PEAK HOSPITAL ASSOCIATION FOUNDATION KLS MARTIN CRANIOREHAB.COM HAILEY SUTTON’S FAN ROCKY MOUNTAIN CLUB POWER

CLEFT & CRANIOFACIAL GIL & DOTY WEAVER CENTER UTAH / CRANIOFACIAL FOUNDATION FOUNDATION OF AMERICA JOHN MOULTON’S STARFISH BARCEL USA CHILDREN’S HOSPITAL OF PHILADELPHIA BLUE CROSS BLUE SHIELD OF TEXAS CHILDREN’S HOSPITAL BOSTON CHILDREN’S HOSPITAL FOUNDATION FOR FACES OF CLIF BARS CHILDREN COOLA SUNSCREEN DUNN COMMUNICATIONS, INC . FLORIDA CRANIOFACIAL FOURTH DIMENSION INSTITUTE ORTHODONTICS & CRANIOFACIAL ORTHOPEDICS WORLD CRANIOFACIAL FOUNDATION BETHANY JOHNSON MEDICAL CITY CHILDREN’S AMERICAN CLEFT PALATE- HOSPITAL CRANIOFACIAL ASSOCIATION SHARON ALLBRIGHT CCD SMILES UNIVERSITY OF UTAH WILLIAMSON CREATIVE SERVICES CONNECTMED ORG. …and all of our generous donors 31 children’s craniofacial association 13140 Coit Road, Suite 517 • Dallas, TX 75240

Honorary Chairperson: Cher

Board of Directors: George Dale, Chair, Corning, NY Kelly E. Cunha, Tampa, FL Dede Dankelson, Libertyville, IL Margaret Lavender, Norman, OK Bill Mecklenburg, Mission Viejo, CA Russel Newman, JD, Seattle,WA Haley Streff, MS, CGC, Houston, TX Steven Weiss, Dallas, TX Rose Wiese, Mars, PA

CCA Network Editor: Kelly Liszt, copybykelly.com

CCA Network Design and Production: Robin Williamson, Williamson Creative Services, Inc.

Executive Director: Erica Mossholder, MBA

Program Director: Annie Reeves

Development Director: Christine Andler

Outreach Director: Khadija Moten

Marketing & Communication Coordinator: cheers Kara Jackman for volunteers! 3 voice 214.570.9099 fax 214.570.8811 We are happy to recognize Kathleen toll-free 800.535.3643 Philippi of Coto de Caza, CA, and url CCAkids.org give her a huge HIP HIP HOORAY for being a dedicated volunteer each year The views and opinions expressed for the Morgan Meck Match Play in this newsletter are not necessarily Invitational . those of CCA . If you no longer wish to receive this Kathleen lends her time and talent to newsletter, please send an email to this event annually, prepping items for AReeves@ccakids com. or mail the label the silent auction, stuffing and sorting gift to the CCA office and ask that bags, and most importantly, photographing it be removed from the mailing list . the two-day event . We are fortunate to have If you know of someone who her encouraging smiles, and capturing moments on would like to be placed on the the course! She’s pictured here with another champion for ­mailing list please forwar­ d to us their name and address . CCA, Chris Jones, also of Coto . These two ladies have Kathleen and Chris at the more than great style in common: their love for CCA Kids! Morgan Meck Match Play Thank you both for all your kindness and generosity .