NFED.Org Gets Extreme Makeover

By Mare Fete, Executive Director Great news! Our online home at www.NFED.org has had an extreme makeover. We have launched an entirely new website to better serve our ectodermal dysplasias community. It’s our gift to our families, donors, volunteers and care providers in celebration of our 35th anniversary. Families complained about the old site, how…

An Anniversary Gift for You

As you know, in 2016 the National Foundation for Ectodermal Dysplasias (NFED) community is celebrating our 35 anniversary!   This year, we celebrate 35 years of NFED success.  Over the years we have added tremendously to the body of knowledge of ectodermal dysplasias, made great strides in treatment and have had tremendous research successes. Thirty-five years…

Genetic Counseling Helps Make Sense of Ectodermal Dysplasia

If you or your loved one recently received an ectodermal dysplasia diagnosis, you may have more questions than answers at first. How did this happen? Can our future children have it?  Should I have other family members tested? All of your questions are valid ones and normal to have following a diagnosis. The specialist best…

We Volunteer So Others Don’t Feel Lost

by James Kluzek We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever. We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either….

We Are Flying High!

We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…

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…