Thursday, July 26, 2018

Dallas West Village Family Night Out Features Family Fun

By Kara Jackman and Erica Mossholder

Araceli Kimberlin and Steven Weiss with their families will spearhead CCA’s Family Night Out in the West Village on August 16th from 5pm to 9pm. Araceli, CCA Mom, will host families on the patio of Village Burger Bar located at West Village. There will be complimentary appetizers and a kid-friendly craft activity. Araceli will facilitate conversations about CCA and craniofacial conditions. Steven will speak about his life and involvement with CCA at 6:30pm in the Kendra Scott store.

Araceli was born with Crouzon’s and now has two sons, one, Aaron, with Crouzon Syndrome, too. Her unique perspective on craniofacial conditions as both a former patient and now a parent is unique. She says, “as a child, Crouzon Syndrome was just something I had. I had to go into surgeries for it and it was just a part of my life. Having a child with it opens up a whole new world. All of a sudden I have become a doctor, advocate, nurse, insurance bill specialist, protector and so many other things I wasn’t when our first son was born.”

Further, she feels strongly about CCA and the community we provide, “When we found out that our second son Aaron had Crouzon Syndrome like I did, I wanted his experience to be different. I wanted him to have a community where he could feel accepted and where he could feel like others could relate to him and the issues he was facing.”

Steven, too, felt strongly about advocating on behalf of those born with facial differences. He is a member of the CCA Board of Directors, which allows him to use his leadership and business skills to increase CCA’s reach to help more families. Steven was born with Crouzon syndrome, too. He shares his story about meeting his wife, Petty, and starting their family, with twins Blake and Claire, giving hope to young adults with facial differences that are looking to start healthy relationships and families.  
At each location, the stores will be donating a portion of the evenings proceeds to CCA. It’s the perfect time to shop and eat for a good cause. At Kendra Scott, we’ll be doing a raffle for everyone that makes a purchase to win a lovely gift basket and you don’t have to be present to win! The store is also accepting call-in orders, so no matter where you are in the country, you can participate. As long as the item is in stock, it will ship FREE to you!
We hope you’ll join us for this Family Night Out, to mix and mingle with CCA family and friends and to help raise much needed funds for CCA in the process.
If you do not live in Dallas you can still take part in the fun and raise money for CCA at the same time. Just follow these directions to shop Kendra Scott on Thursday, August 16, 2018.

Tuesday, July 17, 2018

#WonderWednesday: 12-year Old Entrepreneurs in New Jersey, Inspired By 'Wonder'

Students at the Academy St School in Dover, NJ were kind enough to donate to CCA after completing a series of projects that raised money for the non-profit organization. As part of an economics unit, 60 sixth graders formed 12 companies that competed with one another to earn the most money. The project called BizWorld helped students understand the economy and gave them the ability to help others, too. 

Priscilla Wellborn explains BizWorld this way, "We use this project at the end of the year and it is a big hit. Companies make and sell products, using every component of the entrepreneurial cycle... design, manufacture, market, sell. Students learn to keep ledgers and pay for expenses. They learn that they need to work in team to accomplish their goal. We usually make about 1,000 in profit, sometimes more."

Wellbourn and her students specifically chose to donate the funds they earned through the project to CCA because they recently read the book "Wonder." Auggie Pullman, the main character in the book, was born with Treacher Collins, and the sixth graders wanted to help an organization that helps real kids like Auggie. Wellborn's students felt the book and movie was " amazing." They really connected  and loved it."

After all the work on the project was complete, there was only one thing left to do: donate the money. CCA teen, Alyssa Rieger accepted the check on behalf of CCA for a whooping $1,985.80. Impressive! Alyssa was born with craniosynostosis who hopes to become a Child Life Specialist at a children's hospital. Right now she is a rising sophomore at Warren County Technical School studying Child Development with the hope that she will brighten the days of children born with medical challenges. Most of her surgeries took place during the ages of 10-14. In her spare time Alyssa enjoys bowling and is a member of her volleyball team. 

Thank you Academy St School in Dover, NJ and to Alyssa for accepting this check for us. We are truly grateful for all that you have done. 

Tuesday, July 10, 2018

#WonderWednesday: Jonathan Siebert Shares His Story and the #ChooseKind Message

Hello!  My name is Jonathan Siebert and I have been talking to students in the United States of America and around the world about the book "Wonder" since January. I share with them my real life Auggie Pullman story.  I have talked to students in 50 States as well as Pakistan and Australia.  One night I had an amazing idea to spread awareness to “choose kind," stop bullying, and educate others to accept people’s facial differences. My video chats with classrooms have made me so happy.  The feedback I’ve been getting is that I am changing people’s lives. It also was a good way for me to get through a tough time since my father passed away in March. I have also talked to classes in person, which have created memories I will never forget. One of my favorite experiences in the classroom was teaching Zumba after telling my story. I am a certified Zumba instructor. Wonder has changed my life and I pledge, and hope you do too, to #ChooseKind. 

Jonathan in action speaking to students

Skype session

More happy and enthralled students listening to Jonathan

Saturday, July 7, 2018

CCA Creates Opportunity for Community at Annual Retreat

By Kara Jackman 

Another Annual Retreat and Educational Symposium is in the books. After days of reflection, it struck me that Annual Retreat and one of our attendees children's book have a lot in common. 

Patricia Simon, author of two children's books and Registered Nurse in Illinois, published Simon and the Buddy Branch in 2017. I acquired a copy shortly after returning home from the 2018 Annual Retreat and Educational Symposium in Salt Lake City. I was struck by the similarity between the experience I just witnessed among our families and the one Simon describes in her book through Simon the cardinal's description of the Buddy Branch for his new friend, named Buddy. The Buddy Branch is a place where everyone belongs no matter what their differences...just like Annual Retreat. The text from her book reads...

"I have an idea," said Simon "Let's call this branch the Buddy branch." 

"What's a buddy branch?" Buddy asked. 

A buddy is a friend like you," Simon explained. "The Buddy Branch will be a special place for birds to meet and make friends. If you are ever feeling alone, just sit on this branch. Another bird will see you and join you. Lean on him or her in times of need. Friends can lift you up. What do you think?" 

"Good idea!" the birds agreed, tweeting their approval. 

Both Retreat and the Buddy Branch are beautiful spaces for complete and radical acceptance of all people (and animals)!

There is such joy in those spaces we inhabit during the Annual Retreat weekend. Such joy in the small things from the mundane like helping a fellow retreat attendee apply sunscreen to  the magnificent like the true release of dancing the night away like no one is watching, because no one is. I dance my best at Retreat, because we inhabit a zero judgment zone. 

A community space like Annual Retreat provides must be create, cultivated, and nurtured. CCA creates the opportunities for our community to grow. They provide the structure, the organized activities and meals that lead to late night conversations with friends and families, sitting outside under the stars, or in the lobby on comfy couches. The network we build together extends beyond the four days we spend together every year during the last weekend of June. Soon, after Annual Retreat ends, the Facebook friend requests come rolling in during the days and weeks that follow. The Facebook phenomenon is one that I find to be the most remarkable, unspoken by-products of our retreat weekend. On Facebook and other social media platforms, we stay together in communion with one another, sharing our struggles, triumphs, accomplishments, good and bad news. In times of need, we hold each other up. In times of success, we cheer each other on. There is nothing more beautiful than watching all of this play out, day after day, between our annual gathering. The bonds are maintained through tight connections of the world wide web that we are leveraging for good each time we comment on a post in support of one another. 

I hope everyone enjoys and makes great use of the CCA network, the Buddy Branch, if you will, that CCA built in the form of Annual Retreat. We hope that we may continue to widen the circle for more families to join. We are a positive, resilient, and fun group. Each and every person reading this is part of what makes these descriptors come to life.  All of us are important to the community's strength today and in the future. Please stay positive, keep supporting and educating one another through the craniofacial journey which we all share during this next year. 

I look forward to seeing you all in Scottsdale, AZ in June 2019, where we can build another four days of fun for everyone. 

Thursday, July 5, 2018

MORE Reflections on 28th Annual Retreat in Salt Lake City

Ed. Note: I culled a few more retreat reflections from Katie Whicker and Retreat OG, Erin Richmond. These two range from the funny to the sentimental. I hope you enjoy them in equal measure for all that they are. -Kara J. 

By Erin Williams Richmond 

I am home and now that I have hugged my boys and reflected on the weekend, I am going to try my best to find the words to describe yet another amazing, memorable weekend at the Children’s Craniofacial Association annual retreat. CCA has been a part of my life since I was 3 years old. In 1985, Cher starred in the movie Mask, a film about the life of a boy who had a rare craniofacial condition. My very first experience was a meet and great with Cher at her Heart of Stone Tour in 1989, followed very soon after by an event in Washington DC to promote awareness of craniofacial disorders and advocacy for much needed insurance coverages. It was at that time when several families who spent time with Cher realized as they connected and created lifelong friendships how very important it was to make those connections for the well-being of both parents and children. The first CCA retreat was born 28 years ago from a very private and emotional discussion in Cher’s hotel room about how great it was to finally be in a place together where our families felt safe and understood. My family was part of that conversation and just a short time later we participated in the very first retreat in Orlando, Florida. Char and Jill along with others have been an important part of my life ever since. We were not able to attend every retreat but when we did I always loved being with my old friends and making new ones. It's remarkable, and actually surreal to be able to witness (although really too young to actually remember haha) a small group of families come together with an idea and to see how over the years this amazing organization has grown to exceed the capacity of some pretty huge hotels. It's incredible. It's hard to put into words. On Saturday, I took a step back to soak up the moment and it brought me to tears. 
I have found my safe haven. My home with those that I love and who love me unconditionally is my safe haven. Beyond the walls of my house, I am faced with many obstacles and uncomfortable situations daily but thankfully I am strong enough to overlook and overcome them. My other safe haven is with my CCA family. Once year, I am blessed to be surrounded by children and adults with craniofacial differences and their families. Living with Treacher Collins isn’t easy but it’s an amazing life that I live and wouldn’t trade it for anything. To flourish, we all need a safe place, both physically and emotionally, to come home to. For many of us, the annual CCA retreat is our safe place to come home to. It’s our sanctuary. We are surrounded by others who “get it.” It’s four days where we aren’t stared at. You walk into a large room and you don’t get that high school anxiety about who to sit with and if someone will like you. We don’t get asked questions about how we look. We aren’t judged. No one presumes incompetence or lack of intelligence because of how we look. We are confident. We talk to strangers, we dance, we sing, we crack jokes. We feel empowered. We lift each other up. It’s a place where inner beauty, personality, intelligence, talent, sense of humor is valued and cherished above all else. Someone tells you that you look beautiful and it feels genuine. You feel loved. You feel like you’ve known these individuals for a lifetime. You become family with someone you met for the first time yesterday. Lifelong friendships are formed and they flourish year after year. Tears are shed … happy tears and tears of sadness or fear. The smiles and laughter spreads faster than wildfire and our cheeks hurt for weeks. For us, kindness isn’t a choice we make … it’s an inherent part of who we are. I come home immersed in the superficiality of the world around me yet I have such hopes and dreams for a better, kinder place. The families that I have been with for the last four days, some of which I’ve known for 28 years, are the most beautiful, kind, talented, courageous, intelligent people I have ever had the pleasure of knowing. While life has gotten busy over the years, the lifelong friends and support system from CCA have never faltered. I consider myself incredibly lucky to be a part of the CCA family. “Courage. Kindness. Friendship. Character. These are the qualities that define us as human beings, and propel us, on occasion, to greatness.” I am blessed to be a part of this one big happy CCA family, to have the CCA retreat as my safe haven, and to know such great, wonderous people! 
Thank you Erica Crabtree Mossholderr, Annie Burt ReevesCharlene Char Duitsman SmithJill Gorecki PattersonKara Jackman and so many others for making this retreat a memorable, safe haven for us year after year. You are appreciated and loved beyond measure. 

Wednesday, July 4, 2018

#ThankfulThursday: An Annual Retreat Attendees Reflect on Their Experience

By Sabrina Robineau
The young girl on the left spent most of her childhood looking in the mirror, asking God why she was born different. She would constantly compare herself to her friends, her siblings and the rest of the world. She hated her reflection in the mirror and wished she had a "typical" face. She often felt trapped, hidden behind a face that didn't match who she was on the inside. 

There was no social media when she was growing up. There was no way to easily search "craniofacial syndrome" on Google. There were no online networks to join for support. This girl felt completely alone, not knowing there were others out there who were born just like her. Others who had the same physical traits as her and who had the same surgeries that she'd gone through. 
Flash forward 20 years later... that girl is now surrounded by hundreds of kids and adults who were also born with a craniofacial syndrome. Her world has been opened up and it is all thanks to CCA - Children's Craniofacial Association. 

Attending my 1st CCA Retreat back in 2005, at 16 years old, it changed my life for the better. Not only did I finally get to meet other kids with Pfeiffer Syndrome and make new friends, CCA became my family. For the last 13 years, my CCA family has seen me through the best and worst times in my life and they have always been there supporting me. 

At my 13th CCA Retreat last week, I paused a few times to look around and take it all in. It was the biggest retreat yet - 163 families!! I was just in awe. When I saw the kids running around, laughing, playing and chatting without a care in the world- it brought me back to my 8 year old self who once felt so alone and thought she was the only one born like this. It makes me so grateful for the kids that have found CCA at a younger age, so that they won't ever feel as alone as I had felt. 

CCA also gave me something else that I always dreamed of but didn't believe was possible, which is... true love. If it wasn't for CCA, I never would have found the love of my life, my fiancĂ© Freddie, who I can’t wait to marry and start our life together. 
The CCA retreats have helped me to accept myself for what I look like on the outside. It helped me to embrace my unique traits and love myself. The outside world can be tough and challenging. I still face judgments from the public. I still have my moments of doubt, and bad days where I feel like hiding.
That's why attending the CCA retreat every year is so important to me. I get to step back into the safe world for a few days and feel so much love and acceptance. 

This year's retreat was incredible as always. Even though I didn't feel like my usual self because of the past rough year I've had, I'm still so glad I got to see my CCA family and to feel surrounded by love and support. I truly can't imagine my life without these retreats and the amazing people that take part in them. 

A big thank you to the CCA staff who worked so hard to put on an amazing retreat. I love and appreciate everything you do for us!!! Can't wait for next year!!