Global Genes Rare Compassion Project Seeks Rare Disease Participants To Share Their Story

The Rare Compassion Project is a great opportunity to share your rare disease story with the future of the medical field: medical students. Global Genes will pair you with a rare disease medical student, so they may learn more about the patient experience as they train to become doctors. In learning more about your daily life, the hope is that the medical professional will be better able to address issues that may not come up at a medical appointment. Contact Global Genes today, fill out the application, and get matched with a medical student today by going to this website. 

#ThankfulThursday: Georgia School Raises Money In Honor of Classmate

Hopewell Middle School in Alpharetta, GA collected and will donate $733 to the Children’s Craniofacial Association. The money was raised in honor of Ian Bibler, an 8th grader at the school and CCA kid.  Further, Vicky Bibler, Ian's Mom says, "This is the third year Ian's Middle School has supported CCA during their kindness campaign during the month of September. 

We cannot thank you enough Hopewell Middle School. Your donation dollars will go to helping kids like Ian access life-saving medical care, attend our Annual Retreat and Educational Symposium in June, or distribute curriculum to students across the country to inform them about our #ChooseKind movement. Thank you for your continued generosity. It means so much to the kids of CCA. 

30 Stories 30 Faces 30 Years: Emerald Demor

"To me, CCA means hope. It’s a chance for worried children and parents to see real-life success stories. It’s chance to meet others who understand some of the special circumstances we live through. It’s a chance to feel just like every other person in the room. Yes, we’re all different but we’re all drawn together in one massive family that welcomes others with open arms and smiling faces."


                                                        -Emerald Demor, CCA Adult


Editor's Note: Emerald is such a light. She is truly caring and loving. Emerald listens and takes the world in carefully and kindly. I always enjoy the time I spend with her at our Annual Family Retreat and Educational Symposium. For the longest time I thought she was from Texas, but in fact she hails from Cleveland, Ohio. She works as an Information Technology Project Coordinator at Hinkley Lighting. She enjoys reading, playing board and video games. She completes the occasional home improvement project project, too. Emerald has two dogs that she loves with her entire heart. That said, family is always first in her book and loves spending time with her parents, nieces, nephews, and friends. In this essay, in her own words, she tells us what CCA has meant to her and what it means to live with a facial difference. Emerald, we are grateful you are part of our community. Thanks for being such a strong power of example for our kids and new parents.

By Emerald Demor
My name is Emerald. I have Crouzon Syndrome. I'm 24 years old. My first CCA retreat was in 2003, when I was 8 years old. Since then, I’ve gone to as many as I’ve been able. Every year [Retreat] is full of moments that change the way I view myself and the world.

To me, CCA means hope. It’s a chance for worried children and parents to see real-life success stories. It’s chance to meet others who understand some of the special circumstances we live through. It’s a chance to feel just like every other person in the room. Yes, we’re all different, but we’re all drawn together in one massive family that welcomes others with open arms and smiling faces.

I love that I’m able to be a role model and an example of success. I want to give hope to parents and kids that having a craniofacial condition doesn’t have to be a limit. I’m constantly pushing myself to do things that challenge me. Even if I don’t succeed, I’m able to bounce back and find another way to accomplish my goals. CCA allows us all to celebrate these successes.

I also get to see examples of what my future holds. At CCA, I see people with great careers, spouses, and families. I see people following their passion in hundreds of different ways and it normalizes everything for me. It shows that even though we have craniofacial differences, that doesn’t mean we all need to follow one path.

CCA is about sharing our successes and blazing trails for each other. It’s about helping each other and sharing common experiences. Of course, we help each other through sadness and fear, but we always return to the good. CCA is a source of positivity and light that we all need.

Being born with a facial difference has forced me to be tougher. I had no choice, but to fight to survive when I was young and that's transferred over well into the rest of my life. It's shown me how strong I am. Even though it might not be easy, I can accomplish anything if I work hard enough. Having a facial difference has also made me kind. I know what it's like to experience bullying and unfair treatment. The only way I know how to overcome this is by being kind to others to try and negate the negative energy in the world. I'll do my best to always create a welcoming environment and be a friend to anyone who needs it.

Registration for Camp Reflections Is OPEN - New Hampshire

Camp Reflections is a week-long camp for kids born with facial differences and their siblings held from August 16-22, 2020 in Southern New Hampshire.

Please contact the fine folks at this superb summer camp for more information. Whether looking for a summer camp for your kiddo or a volunteer opportunity for your teen, this may be the camp for you. 

 Enrollment and volunteer opportunities are available.  Learn more at their website: www.harborcamps.org/facial-differences Click here for our camp registration page for new families

Ask The Adaptive Athlete: Safety Helmets For Hockey and Other Sports

By Kara Jackman 

Question: My son was born with a craniofacial condition that affects the shape of his head. He is interested in playing hockey. Where can I buy a custom made sports helmet to fit my son's head?  

Answer:

Great question! Kids need helmets for so many sports including, biking, hockey, baseball, and even rock climbing if they are so inclined. I believe the sky is the limit for all kids with sports, which is why I hope this information on helmets is helpful.

I began the journey to learn more about custom made helmets at everyone's favorite search engine: Google. I also emailed a few companies, but received limited responses (read: no reply). My Google search yielded less-than-stellar information, too. Still, I found one article that gave me hope. This Gizmodo article written in 2014 describes a company called Bell helmets that created helmets using 3D camera and printing technology. The key is finding a helmet company that does custom molding to the head. It appears that Easton - Bell did make these helmets according to the Gizmodo article. This was an exciting use of modern technology. Unfortunately, when I clicked on the links to the Easton - Bell site embedded in the last paragraphs of the article, the links were dead. I emailed them and called, too, but got no response from the company. The project must not have been able to sustain itself. 

So back to the drawing board it was...This time I set the computer aside and picked up the phone. I spoke with Jim Brookshier, CPOLPO, an orthotist. He told me that he can acquire a mold of the head through 3D, laser technology, just like the folks in the Gizmodo article. Typically, Brookshier creates these scans for cranio-remolding helmets, but the same technology can also be used for safety helmets, too. For a bike helmet, the laser scans are then provided to Brookshier's technicians to build the helmet. Someone was doing this work!  

Cranio-remolding helmet Photo Credit: OrthoAmerica

Brookshier says, "There are many things to take into consideration when building a helmet of this kind. 'Is there a shunt? What other face or areas of the head are prone to pressure? "What is the extent of the activity and will the helmet need to have a full-face guard? He also advises people to "check their state Department of Transportation guidelines, too." Finally, he recommends speaking with an equipment manager for your local high school or college sports teams to determine how they go about sizing a helmet for baseball, lacrosse, or hockey players. 

Beyond calling the professionals at OrthoAmerica or our friend Jim, the best advice I can give at this point is to go to your hospital's prosthetics and orthotics shop and start asking some questions. Determine whether they can build something specific to your child's head. Also, contact engineering schools or design engineers to get them interested in this need.  Thirdly, bonus points if you can get an orthotist and engineer in the same room to discuss the helmet. The need is there for our craniofacial kids, but also for bike riders, football players, race car drivers, and others that want better fit and protection. 

Thanks for the great question. If you have a sports, athletics, or activity related question, please send us a private message on the CCA Facebook page or to kjackman98 [@] gmail [.] com.