We have the most amazing Ensuring Lasting Smiles Act (ELSA) advocates! Our contacts on Capitol Hill tell us that the reason the bill has garnered incredible support in a short amount of time is because of our grassroots efforts. It’s because families affected by congenital anomalies bravely share their personal stories with Congress. That’s exactly what happened again on Tuesday, June 21 when 314 advocates met with 49 U.S. Senate offices for the National Foundation for Ectodermal Dysplasias (NFED) Virtual Advocacy Day with the Senate.
Morgan Rigsby is the kind of mom who wants to model the behavior she wants her kids to have. That’s why she’s become a passionate advocate for the Ensuring Lasting Smiles Act. In our Volunteer Spotlight, Morgan talks about what volunteering has taught her, how she celebrates the small victories with her son, and why you need to be open to sharing your story.
April 4th was an extraordinary day for families affected by ectodermal dysplasias and congenital anomalies!
You could almost hear the cries of victory and feel the joy of our advocates, families and staff who watched the live stream of the House of Representatives where they announced that ELSA had passed. Read about the exciting vote and what’s next for the bill in the U.S. Senate.
Three hundred brave advocates from 46 states shared their heartbreaking stories with U.S. legislators at this year’s Virtual Advocacy Day on Capitol Hill. They talked about the numerous surgeries and ongoing treatments they or their child has needed and how insurance companies won’t pay for it. With the House voting on April 4 for ELSA, find out what you can do to help.
Families affected by congenital anomalies are closer to getting health insurance benefits for the medical and health treatment they need. Our bill to mandate such payments took a big leap in the U.S. House of Representatives. Find out what the consensus calendar means and how you can help pass the Ensuring Lasting Smiles Act.
February is upon us, and the National Foundation for Ectodermal Dysplasias (NFED) has a lot going on! In honor of Ectodermal Dysplasias Awareness Month (EDAM), please help us spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.
Two Alaskan families have helped achieve an amazing feat. The Brubakers and Wentzels have every legislator in their state co-sponsoring the Ensuring Lasting Smiles Act (ELSA)! This month, we shine our volunteer spotlight on these Alaskans to celebrate their accomplishments and learn more about how they did it.
The National Foundation for Ectodermal Dysplasias (NFED) turned 40 years old on December 24, 2021. Normally, we would have recognized this milestone throughout last year. But, the pandemic caused us to shift our plans. Find out what we all have planned for this celebration year!