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.
The Shimchick family has faced many challenges caused by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Denyse and her three children are all affected. Together, they have been through 217+ surgeries! Despite their medical needs, the family has made volunteering a key part of their lives. Find out how they strive to help others.
Whenever the NFED has a need, our volunteers step forward and help. We want to let you know that your dedication and inspiration is essential to the work that we do—we simply cannot do it without you. THANK YOU!
We are saddened to share the news that one of our beloved volunteer dentists has died. Read how Dr. Tom Vergo donated his time and talents to the Foundation for more than two decades.
Over the last two years, the NFED had to adapt to virtual volunteerism and fundraising in response to a global pandemic. See how you can get involved with these efforts.
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.
John Dickie IV was a young adult when he attended his first NFED Family Conference in 1987. His eyes were opened when he saw older guys affected by ectodermal dysplasia who had families and careers. Their lasting impression made him and his family want to give back to the NFED family, too. Read about the Dickies’ ectodermal dysplasia journey, their love for the NFED, John’s adventures and the advice he has for parents.