Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.
What to Expect When You Visit Your Legislator at Day on the Hill
Are you attending NFED Advocacy Day on Capitol Hill? Veteran advocate Karl Nelsen walks you through what to expect when you meet with your legislator.
Meet Your Legislators Close to Home
Beth Pond has been advocating for ectodermal dysplasias health benefits for 23 years. She shares what you can do in your home state to create change.
Advocacy from the Classroom to Capitol Hill
Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
Prevent and Treat Nasal Crusting with Ectodermal Dysplasias
Do you or your child have trouble breathing because of “nasal rocks” or “concretions” (aka big boogers)? Find out what causes them and how you can best prevent and treat them.
Thank You, Jodi, Editing Queen of the NFED
Jodi Edgar Reinhardt has dedicated 25+ years to the ectodermal dysplasias community as a staffer at the National Foundation for Ectodermal Dysplasias.
Running the Disney Princess Half-Marathon with EEC
Caitlin Brown was skeptical when her mom, Suzanne, wanted to join her in running the Disney Half-Marathon to raise money for the NFED. But she knew, there was no telling Suzanne, who is affected by EEC syndrome, she couldn’t do something. Find out how this mom-daughter duo did.
Who Will You Meet on Capitol Hill?
Conducting face-to-face meetings with your two U.S. senators, one U.S. representative, and members of their staff is absolutely critical to gain their support for the Ensuring Lasting Smiles Act (S.560, H.R.1379)! So who will you actually meet when you travel to Capitol Hill in Washington, D.C. for NFED Advocacy Day? Find out who you might meet, their role, and tips on what to say.