Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.
The Ensuring Lasting Smiles Act (ELSA) was introduced as a bill in the U.S Senate and House today. This legislation will significantly impact families affected by ectodermal dysplasias and other congenital anomalies. If passed, it will provide health benefits for their complex dental care.
Families from across the U.S. met with members of Congress on July 18 for the 2nd National Foundation for Ectodermal Dysplasias Advocacy Day on Capitol Hill. They educated about ectodermal dysplasias and the need for the Ensuring Lasting Smiles Act (ELSA).
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.
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.
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.
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.
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.