Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
Nasal Irrigations Prevent and Treat Crusting
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.
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…