An estimated 3.5 of 10,000 people are affected by ectodermal dysplasias. Very few people have heard about these conditions or know about the challenges people with it face. You can help us change that number. Join the National Foundation for Ectodermal Dysplasias (NFED) in our worldwide effort this February to raise awareness and funds for these…
Happy Holidays!
Wishing you and yours all the beauty of this magical holiday season. We wanted to share with you in this video some of the magical people that we get to help all year long. Happy holidays from all of us at the National Foundation for Ectodermal Dysplasias!
Volunteers Helped Run Family Conference
by Lea Richardson Our Volunteer Spotlight this month is the Family Conference Committee and all of the Family Conference volunteers. They pitched in and helped with Setting up and taking down, Manning the registration, promotional items, volunteer and fundraising tables, Facilitating and presenting in Workshops, Monitoring the Silent auction and distributing the mystery bags, Executing the Create-a-Smile, Taking…
Volunteer Spotlight: Our Website Committee
Building an all-new NFED.org is a major undertaking! Luckily, we have five volunteers who are advising us at every step of the way. The research phase of the project began in June of 2015. We are excited about how the site is developing. The big reveal will be in November. For their hard work and…
Ear Wax In Ectodermal Dysplasia
Some people affected by ectodermal dysplasias may experience abnormal wax production or accumulation. We expect this since wax glands are specialized types of sweat and skin glands. The most frequent problem is excessive accumulation of wax in the ear canal. This may result in severe itching and even hearing loss. Removing the Wax If a…
Transforming Me
At 37, Cheryl Kingsford has been working for a lifetime to get the smile she radiantly beams every day now. Cheryl was eight years old when she was first diagnosed with ectodermal dysplasia but because of other issues going on in her family, the diagnosis was forgotten. It wouldn’t be till 22 years later that…
A Treatment for Corneal Erosions in EEC?
Corneal abnormalities are a major clinical issue encountered by patients affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. EEC is caused by dominant mutations in the p63 gene, meaning that EEC patients have one copy of the normal p63 gene and one copy of the mutant p63 gene. It has been suspected that removing the mutant p63…
Welcome Home!
By Sue Kluzek I don’t know about you, but I am getting very excited about our NFED Family Conference this summer! It’s an exciting time for all of us. We (the NFED) are celebrating our 35th anniversary. We have new programming and a new format for some of the conference. It’s going to be great!…