Tuesday, January 16, 2018

#NewsDayTuesday: New York Triplets Thriving 1 Year Into A Beautiful Life

Photo Credit: Newsday


Triplets born in upstate New York are thriving 1 year after being born with Craniosynostosis. Read about this family's courageous first year in this article in Newsday

Watch the video embedded in the story.

CCA has even more information about craniosynostosis on our website. Please take a look at our booklet on this facial difference.

There are more resources at our website on all craniofacial conditions and facial differences.

Sunday, January 14, 2018

The Mighty Writing Prompts for January




On your mark, get set, ......and WRITE! If your New Year's resolution is to write or reflect more, then here are some great prompts from our friends at The Mighty that could help get you thinking! Personal reflections are welcome, too.

Don't want to go worldwide with your story? No problem!. Write something for yourself in a private journal. If you want to share a more polished, personal reflection with just your CCA friends, contact Kara Jackman about publishing it on our blog.  Email kjackman98 @ gmail.com.

Here are those prompts I promised from The Mighty...

1. So often, after years of waiting and researching and more researching, we finally get a diagnosis and then realize the signs were there all along. You may feel regret (even though it’s not your fault!) that you or, more importantly, a doctor didn’t pick up on them. If this is sounds familiar, write about the moment you got your diagnosis and explain the signs that this was there all along. A post like this could help someone still on their diagnostic journey get their answer sooner.
2. Do you experience a symptom related to your condition that most with your diagnosis don’t experience? Tell us about the symptom and how it affects your everyday life.
3. Talk about a good moment that happened in your life that probably wouldn’t have if you or a loved one didn’t have the diagnosis you do. Finding the silver linings of health challenges isn’t for everyone, but if you are someone who has found some good in it all, tell us about that in this post.
4. Describe a movie, book or TV moment that resonated with you because of your life with your or a loved one’s condition. Why did this moment stick out to you?
5. Relationships (both platonic and romantic) are hard even if you are not facing extra challenges. Choose a relationship in your life (from someone you went out with once to a close friend to a life partner, etc.) and describe a moment where your health made that relationship challenging. How did you face that road bump, or what advice would you give to someone going through the same thing?

Thursday, January 11, 2018

Massachusetts' Residents Advocate For Insurance Coverage




By Criss Quigley


Two bills have been filed in the Massachusetts legislature which would close the loophole that allows insurers to deny coverage for treatment of rare, disabling genetic craniofacial conditions primarily affecting the mouth and teeth. Dealing with a craniofacial condition is challenging, and lack of insurance coverage for medically necessary reconstruction of the teeth for people with craniofacial conditions can be financially devastating. An act relative to ensuring treatment for genetic craniofacial conditions (H581 and S511) filed by Senator Julian Cyr of Cape Cod and Representative John Scibak of South Hadley are currently awaiting committee vote in the Joint Committee on Financial Services. The bills would require insurance plans to cover medically-necessary functional repair or restoration of dentinogenesis imperfecta (DI), amelogenesis imperfecta (AI) and ectodermal dysplasia (ED).

Treatment for these rare craniofacial disorders is multi-stage and complex, and initial costs may be upwards of $100,000 - obviously unaffordable for the average family. Without treatment, patients may experience severe pain, difficulty eating, speech problems, multiple infections, bone loss, and psycho/social issues such as teasing and bullying. As with most congenital disorders, treatment is necessary throughout the lifespan.

My daughter and I have been working together to get legislation passed for ten years, and recently testified at the Massachusetts State House in favor of the bills. Also speaking in favor were Representative Dylan Fernandes of Cape Cod, Dr. Yoshiyuki Mochida from Boston University Goldman School of Dental Medicine, Dr. David Tesini from Tufts University School of Dental Medicine, and Alan Holbrook from the National Organization of Rare Disorders (NORD). Legislators were presented with packets of over 50 letters of support from Boston dental schools, organizations and foundations, health and dental professionals, and concerned citizens.

Since 2012, insurance coverage for dental treatment associated with cleft lip and palate has been mandated in Massachusetts. We hope that Massachusetts, long known as a leader in health care, will step up to address this gap in coverage and ease the financial burden on people living with these other rare craniofacial disorders.

Why not ask your legislator to file legislation to mandate insurance coverage for medically necessary treatment of the teeth associated with genetic craniofacial conditions? As more states pass legislation, others will follow suit.

To write letters to the Massachusetts Joint Committee on Financial Services in support of the bill, please visit: https://malegislature.gov/Committees/Detail/J11/190

Wednesday, January 10, 2018

#WonderWednesday: "Wonder" Lesson Plans Available, Free Download!



Educators around the country rejoice! CCA's "Wonder" curriculum is not available with just a click of the mouse. Click the images below to access a PDF of the lesson plans that you can use in your classroom. Thank you to Carolyn Johnson for her hard work on the curriculum for our teachers.























Tuesday, January 9, 2018

#TuesdayNewsDay: Boy With Microtia Honored by UK Futbol Team




A boy from the United Kingdom had an amazing opportunity to join his favorite futbol team. It was a dream come true for this little guy with microtia. He was honored as mascot for the day by the Everton futbol team as they took on Manchester United on New Year's Day.  Read more and watch video from this families incredible experience at the Hartlepool Mail website.