Sunday, August 12, 2018

Thank You Brooklyn for Raising Over $17,000 for CCA!


Thank you to Angela, Brent, and "WonderKid" Brooklyn Wojtyniak for hosting their first golf tournament at Fox Creek Golf Course in Livonia, Michigan on August 5th. The Wojtyniak's raised $17,054. Two hundred people participated during the day-long event which included 18 holes of golf, prizes for the longest drives and other acts of excellence on the course. The Wojtyniaks would like to thank John MacFarland of MacFarland and Company Home Sales for their generous donation of many prizes for the golf competition. Each hole was sponsored by a company or individual yielding a $100 donation per hole. CCA and the Wojtyniaks are very grateful for those that played golf, sponsored hole signs, and contributed raffle items. 

After the action on the course, everyone gathered for lunch and raffle prizes at the Fox Creek clubhouse. While lunch was delicious, it was the raffle items that drew the most interest by all those in attendance. Angela, Brooklyn's Mom, said, "We had a raffle (approximately 60 raffle items) and a silent auction (25 items) including a Shinola watch, Star Wars Millennium Falcon LEGO set, VIP wine tour at Chateau Chantal Winery in Traverse City, MI just to name a few."

Deb Mato commented on the actives and flow of the day by saying, "We all had a great time with such kind and caring people. The golf, silent auctions, raffle prizes, and delicious food made it a great event! We were happy to support such a worthwhile cause. The supportive “Brooklyn family” is always growing in kindness and love."

The Newton family who participated in the tournament had some kind words for Brooklyn and the Wojtyniak. This bit of feedback truly warms the heart, showing us how Brooklyn was truly at the center of the planning, programming, and spirit of the event. The Newtons say, "It was a B kind-of day; everyone chose kindness. And because of B, we choose kind everyday; for that choice makes us better people. So does loving her. She lives through others like others live through her. Lucky are we to be in her wake, to see Ang’s imagination and Brent’s determination make her into the B she is today, and the one she’ll continue to grow into every tomorrow. August 5th, 2018 was another reminder of how beautiful life can be through the eyes of a child full of wonder."

Thank you again, Brooklyn for spreading love in the best possible ways: to help others in need! Congrats on your successful event. We hope you continue to contribute to CCA with the help of your generous family and friends. 





Thursday, August 9, 2018

Adult Spotlight: Tyler Nienas




“Is Tyler okay?" my teacher asked. "He looks like he got punched.”

Those words from my fourth-grade teacher to my Mom changed my life forever. It was because of her concern that my mother scheduled a doctor’s appointment which led to a diagnosis of Fibrosis Dysplasia on the left side of my face. At ten years old I didn’t really care or know of the impact this diagnosis would have on my life. 

There have been the obvious downs of living with a rare craniofacial disease. The teasing throughout
middle school was brutal. I would constantly be asked, "what happened to my face?" "Why is your face so puffy?" I would be called ugly, deformed, gross, and burn victim just to name a few choice words. While these actions and words carved a huge blow to my self-esteem, I thought there would be some solace in my first surgery, which I had right as I was starting high school. I thought finally my face will be “normal” now. It was December 20, 2006. The surgery was performed in St. Louis. I was fourteen. I remember waking up in tremendous pain and disorientation. I have had over a dozen surgeries since then, some in St. Louis others in Dallas, TX. All these surgeries were related to my Fibrosis Dysplasia.

There have been nights where I have cried myself to sleep because I felt ugly and isolated, like no one else could understand what I've been going through. I became shut off from the world. And to be honest, I have been there and I have hit rock bottom more than once.

However, you cannot let your disease define who you are. Adversity does not define you. You define your direction and purpose in life. I had great support from my friends, therapists and most importantly my family that helped me cope with the struggles of Fibrosis Dysplasia. There are more people in your corner than you realize. It took me a long time to accept my disease and come to grips with it. I became a better person because of it

Now, I am a 26-year-old man living and working in St. Louis, Missouri. I can truly say I am blessed to have this happen to me. It has given a new vigor to my life. It has made me appreciative of what I have. It has taught me that life is meant to be lived. Beauty is skin deep. It is the impact of your actions and how you treat others, no matter their physical appearance, that will ultimately be what people remember about you. It is that attitude and mindset that has made me able to share my story with others. I encourage all of you to share your struggles, your pain, but most importantly your victories because those happen daily. The victories happen when you choose to live your life and look beyond the realm of physical appearance, and into the world of supernatural courage and determination. 

If you are living with a craniofacial disease, whether you are a parent or patient, know that I and everyone here at the CCA is in your corner and rooting for you always!

Tuesday, August 7, 2018

Help Celebrate Craniofacial Awareness Month, Kickoff Dallas Sat., Sept. 8th



Dallas, TX -- Children's Craniofacial Association celebrates its 14th annual Craniofacial Acceptance Month this year and you can be part of the fun. CCA will host a Dallas-area picnic on September 8th. We encourage our families to host awareness events in their home cities spanning across the United States during the month of September. CCA hopes that you will share your stories and spread the word about our courageous kids through your local newspaper, TV, and radio stations.

Many kids with facial differences, empowered by the movie and New York Times-bestselling book, Wonder, eagerly want to share their “real Wonder” stories with the world. You can help them reach the goal by giving them access to your media platform. If your newspaper, television or radio station covered one of our CCA kids’ stories during the premiere of the movie “Wonder” or for last year’s Craniofacial Awareness Month, please consider following up with the family. Here is a list of links to stories that received news coverage last year https://ccakids.org/real-wonder-stories/

The Dallas-area picnic is our kickoff event signaling the beginning of the month-long celebration of
everyone in the craniofacial community. Sandy Lake Amusement park in Carrollton, TX will host the
picnic on Saturday, September 8th from 11AM - 1PM. This year a barbeque lunch will be provided. The event will feature games, a D.J., free amusement rides, and time for families to connect and meet children with craniofacial conditions.

Dallas CAM Picnic 2017
Children’s Craniofacial Association (CCA Kids), a national nonprofit headquartered in Dallas and founded in 1989, worked for over 27 years toward the vision of a world where all people are accepted for who they are, not how they look.

Each year approximately 50,000 children in the United States are born with or develop some form of
facial difference (previously called disfigurements). In many cases, reconstructive surgeons can correct these problems early—often while the children are still infants. In other cases, however, reconstruction is not so easy or even possible. To assist these families, CCA offers programs and services including Patient Financial Assistance, the Annual Family Retreat & Educational Symposium, and kindness education and bullying prevention programs in middle schools across the country.

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 10,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. Learn more about at http://www.ccakids.org.


Wednesday, August 1, 2018

From the Bench with Francis: An Interview with Peter Mossey


  

From the Bench with Francis
A regular column on craniofacial news and technology by Dr. Francis Smith


Dr. Francis Smith travels all of the world to conduct research on genetics and craniofacial conditions. He speaks to other scholars about his research interests. In this video, Dr. Peter Mossey, Professor of Craniofacial Development and Associate Dean for Internationalization at the University of Dundee in Scotland talks to Francis about his research. Learn more about Professor Mossey here at his website.



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.