Three guys stand with their arms around each other. Two are wearing baseball hats. All three have a conference lanyard around their neck.

The National Foundation for Ectodermal Dysplasias (NFED) is family.

That’s a common refrain whenever we talk with someone connected to our mission and vision. Initially, individuals affected by ectodermal dysplasias bond over the common genetic realities they face. The beautiful people who make possible all we do and more nurture that connection through compassion and care. 

“At the NFED, the people — simply put — are incredible,” remarked Kelley Atchison, Director of Family and Community Programs since 2001. “Our families not only want to find information and support for themselves, they also want to be this support for everyone they come in contact with. It’s really cool. That’s what human beings are supposed to do.”

Allaying Fears is Our Job

Sara and Kelley are leaning into one another with their heads touching and they both have big smiles. Conference attendees are in the background.
Kelley Atchison (right) from the NFED staff bonds with Sara who was attending the Family Conference for the first time.

Affected individuals know first hand how overwhelming that initial diagnosis can be. They offer support to others because they understand the resilience it takes to live with the challenges of ectodermal dysplasias.

In the midst of their fears and mounting questions, many turn to the NFED first for answers and solidarity. 

“I hear those tears from the mom or dad on the call,” Atchison said. “They feel like they don’t have anywhere to turn. It’s my job to allay their fears and assure them that they are not alone. The NFED is here to help.” 

When they discover the NFED, they not only encounter a robust library of resources, but also connection to a community many have longed for. This community includes more than 10,600 registered members, a growing network of medical professionals and researchers, access to treatments, and an annual conference that brings together all of this and more. 

A bald man with a blue long sleeve shirt is hugging a woman with dark hair. Conference attendees are talking in the background.
Charley Richter and Alice Geismar share a hug at the Stand Together Advocacy Conference. The two met more than 20 years ago at an NFED event.

The Frustration of Not Having All of the Answers

The stories are endless on how the growing NFED community offers vital support. But, not all questions can be answered.  

“I had the opportunity to talk to a dad recently,” Atchison remembered. “They just had a lot of challenges. We could help them a little bit, but we couldn’t help them with everything they needed. It was so hard. That is the hardest part of my job. We can’t always support them with literature, because the research hasn’t been done. More needs to be done.” 

The NFED is constantly inspired to go further for our families, so we can offer more assistance and support to those affected by ectodermal dysplasias. This requires more research, more support, more connections, and more funds. 

Our mission requires an extended family.

A man on the right has his arm around a teenager, Victor and both are wearing conference lanyards.
Victor (left) talks with Anil, who has an adult son affected by XLHED like Victor.

As we lean into our 2024 end-of-year appeal, we invite you to join us because together we can do more. Your generosity will change lives. 

You can learn more of the stories that inspire and shape this work in the video below. We also invite you to consider a donation to this year’s end-of-year appeal.

Donate

One comment on “The NFED Is Family: Together We Can Do More”

  1. 1
    Debbie and Bob Reed (Grandma & Grandpa) on November 19, 2024

    The NFED gave our daughter and her 1 st born with HED – HOPE! Support! Understanding! Hugs! And most of all A reason to Smile! She now has 4 children and all have HED including her! Believe me they are living a very active life together! It isn’t always a ‘rose garden’ but we are all thankful and blessed by the NFED!

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