GlobalSkin Member since: May 2020
National Foundation for Ectodermal Dysplasias (NFED) is an international organization representing 7100 individuals from 85 countries, and serve their community through education, support and research.
The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has at least two types of abnormal ectodermal features— for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia. Get to know more about NFED below!
Thank you to Mary Fête, Executive Director of the National Foundation for Ectodermal Dysplasias (NFED) for sharing her insights on the work of the organization.
What do you consider to be your organization’s biggest accomplishment and success?
Our founder, Mary Kaye Richter created NFED at her kitchen table, at a farm in Illinois some 40 years ago because she had a son who was affected by ectodermal dysplasia. Now we’re almost a $1,000,000 budget a year organization, funding important research, sponsoring major research conferences – ultimately making a difference. Perhaps our greatest success comes from providing individuals and families affected by ectodermal dysplasias with a place to turn for reliable information, support and hope. The goal of our work is to find better treatment, but ultimately a cure for all ectodermal dysplasias.
What are the biggest challenges that ectodermal dysplasias patients face?
I do think that the biggest challenges are the [lack] of treatment options that are available for the dental and skin manifestations (not being able to sweat, over-heating). Being a rare disorder also has certain challenges all on its own...never meeting another [person] with the same syndrome, being bullied because of their appearance.
What is the best piece of advice you have for skin patient organization leaders?
I think my best advice would be staying true to your mission and really knowing who you are. It’s so easy to get lost but identify your mission and vision and make that be your roadmap in everything you do. If you make the decision to best serve your community, you will always be successful.
If you could travel anywhere in the world where would you go and why?
I’ve been so blessed to do a lot of international travel with the organization because of the nature of our work. The one place that I would really like to go, is to the Holy Land, to Jerusalem. So much history, so many of our faiths originated there and just to experience that would be so WOW.