Christine Gottschalk found it heard to hear that her perfect son had ectodermal dysplasia. Worse was learning insurance wouldn’t pay for his care. It made no sense to her that some day, her son may have to choose between paying for his dental care or paying for a college education. She decided to take action and invites others to advocate with her.
Four Key Takeaways from NFED’s 2017 Annual Impact Report
As a nonprofit organization serving the ectodermal dysplasias community committed to transparency, we are happy to share with you our 2017 Annual IMPACT Report. Here we report on just a few of the many activities and accomplishments from 2017.
It Felt So Powerful
Beth Tascione and Jonathan Weil didn’t think about it too much when their one-year-old daughter’s tooth came in pointy shape. But when the second one did, too, they got curious. Their online investigation led them on a journey to learn about ectodermal dysplasia, advocate for their daughter and raise funds for the organization that helped them every step of the way, the National Foundation for Ectodermal Dysplasias.
Top 10 Reasons Why Kids Should Advocate
At 13, Aidan Abbott is already getting to be a pro when it comes to advocating for ectodermal dysplasias on Capitol Hill. The Wisconsin teen built his confidence by telling lawmakers about the rare condition that affects him and thousands of others: ectodermal dysplasias. He and his family will be joining the National Foundation for Ectodermal Dysplasias (NFED) on July 18 for Ectodermal Dysplasias Advocacy Day on Capitol Hill. Aidan lists his 10 ten reasons why every kid with ectodermal dysplasias should come advocate with him.
Returning to Capitol Hill
We’re going back! To Capitol Hill for our 2nd Ectodermal Dysplasias Advocacy Day. We invite the ectodermal dysplasias community to join us July 17-18 in Washington D.C. Our goal is to ask Congress to support a bill (to be announced soon) that will provide insurance benefits for dental care of ectodermal dysplasias.
Endless Questions and No Experience
Kerri Fasulo had a long list of questions when her young daughter was diagnosed with a rare condition. She had no experiences to help her find her way through what lay ahead. Soon, she found the resource that made her realize she was not alone.
Show Us Your Super Smile
You can join families around the world in celebrating Ectodermal Dysplasias Awareness Month and Rare Disease Day. Use our easy tools to share your story and advocate for super smiles. Teeth are not cosmetic! Post our flyers. Share your story. Host a Facebook fundraiser. Attend a Rare Disease Advocacy Event.
Why We Must Keep Fighting
The Abbott family’s journey to new teeth for their son, Aidan, has not been an easy one. They have had to fight their insurance company every step of the way for years. Find out why his mom thinks it worth it and why every family must fight, too!