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 Needed for Ongoing AEC/EEC Research
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.
Building a Relationship with Your Legislators
Advocating can be done by anyone and anywhere. We can do this…together!
Ongoing Research Into Skin Lesions In Patients Affected By AEC and EEC
By Maranke Koster, Ph.D. The long-term goal of our research is to design novel therapies for the treatment of skin and cornea lesions that occur in ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) and ectrodactyly-ectodermal-dysplasia-clefting (EEC) patients. In the past, many of you have donated skin biopsies to support this research. These skin biopsies were used…
Jeronimo, Our Teacher
Jorgelina, a mother in Argentina, was shocked and sad when one of her twin sons was diagnosed with ectodermal dysplasia. As an English teacher, she decided to learn everything she could. But, it was her son, Jeronimo, who became her best teacher and changed her attitude.
Should Kids Attend NFED Advocacy Day on Capitol Hill?
Julie Claeys took her son to advocate in Washington D.C. for the Ensuring Lasting Smiles act. She’s hoping you will join her this year and bring your kids, too.
What does a smile mean to you?
For Rachel Nicksich, attending the NFED Kays’ Kids Camp was the best experience of her life. It inspired her to become an NFED Smile Maker and give monthly, despite her limited income.
Hard But Right Decision
Karl Nelsen has spent his lifetime fighting for insurance benefits to get teeth. Now, he’s fighting for legislation to end insurance denials. He’s doing this for himself, his daughter, and for person affected by ectodermal dysplasia for generations to come.