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Dear friends,

For 40 years, the National Foundation for Ectodermal Dysplasias (NFED) has been the recognized leader and trusted source for the ectodermal dysplasias community around the world. We celebrated this major milestone throughout 2022 with our theme of Deep Roots, Strong Branches. Our yearlong celebration of our first 40 years has come to a close and we thank you for being a part of it.

The Foundation began on December 24, 1981 when 12 brave and determined families envisioned a better future, one filled with better information, resources and connections. This year, the NFED made significant progress on many fronts:

• A clinical trial to evaluate the first in-utero treatment for the most common type of ectodermal dysplasia launched in Germany last November. In preliminary studies, babies affected by x-linked hypohidrotic ectodermal dysplasia who received the prenatal treatment developed normal sweat glands and had other improved symptoms! Families in the United States can now participate in the trial at a clinical site which opened at Washington University in St. Louis. We are proud to have begun and fostered this research for the last four decades. If successful, the treatment would be the first of its kind and be available on the market as early as 2026. Amazing!

• The U.S. House of Representatives voted on and passed the Ensuring Lasting Smiles Act (ELSA) in April. The NFED initiated this federal legislation which will mandate health insurance companies to pay for the medical and dental care of all congenital anomalies, including ectodermal dysplasias. We were disappointed, to say the least, that ELSA didn’t get made into law yet but we are determined to keep advancing it in the next Congress.

• It was pure joy when our Family Conference returned in July after a three-year hiatus caused by the pandemic! We welcomed more than 250 people from all over the country with open arms. Families were jubilant to be together again. Connecting families has always been at the very heart of our mission. Its importance has never been more clear than after the last few years of not being able to do so. It’s simply magical when our community comes together.

Our hearts broke when NFED founder, Mary K. Richter died in November. She was the pioneer with a big heart who led our organization for its first 30 years. She willed it into being and worked relentlessly to help families not only with ectodermal dysplasias but all rare conditions. She was elated to have attended the Family Conference and 40th Anniversary celebration in July. Seeing all of you meant the world to her. In her last days, she shared with me how proud and happy she was with how strong the NFED is. She felt good about the Foundation’s future and our team who works to make that happen.

We are committed to honoring Mary Kaye’s memory by making sure the NFED thrives for the next four decades and continues to serve families. We seek to identify treatments for more ectodermal dysplasias, improve diagnoses, pass ELSA and grow our family. There is much work to be done!

Our small-but-mighty organization has had great success by staying true to that founding mission to empower and connect people touched by ectodermal dysplasias through education, support and research. Thank you for believing in this mission and supporting all families affected by ectodermal dysplasias.

Gratefully,

Mary Fete, MSN, RN, CCM Executive Director

Our Mission

To empower and connect people touched by ectodermal dysplasias through education, support, and research.

Our Vision

The National Foundation for Ectodermal Dysplasias will be a recognized leader among health-related nonprofit organizations and will be known for providing comprehensive services with loving care to individuals affected by ectodermal dysplasias and their families; for helping individuals and families benefit from early diagnosis and care, and for spearheading research that ultimately develops a cure.