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.
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.
Our first Ectodermal Dysplasias Advocacy Day was an extraordinary moment in the history NFED. 175 people stormed Capitol Hill to educate our Congress.
Amazing! Wonderful! Informative! Fantastic! Life-Changing! Educational Empowering! Fun! Fascinating! What word best describes our week in Washington D.C.? They all do! For me, it is hard to really describe the impact that week made on our entire community.