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.
Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
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.
Jodi Edgar Reinhardt has dedicated 25+ years to the ectodermal dysplasias community as a staffer at the National Foundation for Ectodermal Dysplasias.
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.
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.
Volunteers are needed for ongoing research to design novel therapies for the treatment of skin and cornea lesions that occur in individuals with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. The National Foundation for Ectodermal Dysplasias has supported this research led by Maranke Koster, Ph.D. at University of Colorado Denver.
Advocating can be done by anyone and anywhere. We can do this…together!