It is with great honor and excitement that I announce our 40th Anniversary. We have a lot to celebrate! The National Foundation for Ectodermal Dysplasias (NFED) turned 40 years old on December 24, 2021.  Normally, we would have recognized this milestone throughout last year. But, the pandemic caused us to shift our plans. It simply would not have been a celebration without being in person with all of you!

As the calendar flipped to 2022, we began counting down the days till July 14-16, when we will finally get to see you, our families, at the St. Louis Family Conference. Coming together after a two-year hiatus is enough cause for jubilation!

But, we will also reflect and celebrate on 40 years of extraordinary accomplishments in the ectodermal dysplasias community. It’s going to be a Family Conference and Anniversary Gala that you will not want to miss! We hope that you are eager to join us. Let’s make it the largest gathering in history! Are you in?!

But the anniversary fun won’t be limited to the Conference. We have planned to commemorate it all year long. The theme is “Deep Roots, Strong Branches,” which is reflected in our 40th anniversary logo. Our journey has been long, required tireless dedication and resulted in continuous growth of our life-changing services. And we couldn’t do it without you. Thank you for making our first 40 years amazing!

NFED founder Mary Kaye Richter is sitting in a chair. Her young son is laying in her arms.
Mary Kaye Richter cradles her son, Charley Richter, in the 1980s. He was her inspiration for founding the NFED.

Be on the lookout for a series of blogs we will publish throughout the year that will look back on each of the last four decades and what the Foundation accomplished. We’ll hear from NFED Founder Mary K. Richter and other families, volunteers, and staff about their favorite memories.

To celebrate 40 years of supporting you and supporting each other, we are ramping up to make an even bigger impact in 2022 and the years to come! Here are some of the ways we will achieve that.

Passing the Ensuring Lasting Smiles Act (ELSA)

The before picture shows a young Carver at the dentist opening his mouth. He has just a few teeth which are pointed. The after picture shows Carver as an adult with his dentures and dental implants.
ELSA will help people like Carver Claeys get the care they need whether they are a child or an adult.

This year is the second and final year of the 117th U.S. Congress. That means we have till January 3, 2023 (less than one year!) to get ELSA passed into federal law. We’ve been relentless in our pursuit to make this happen for several years.

For 2022, we will ramp up efforts even more. We can’t think of a better gift to give to our families in the United States than having a law that mandates private health coverage for your medical and dental treatment. Of course, we need advocates in all 50 states stepping up with us. We can’t do it alone.

Tell Congress About ELSA

Increased Treatment Funding

A child affected by XLHED sits in a dental chair while a dentist places his upper denture in the boy's mouth.

Since the beginning of the Foundation, the NFED has stressed the importance of children wearing dentures to replace their missing teeth. To help as many children get the dental care they need, we are increasing available funding to $15,000. The pandemic delayed many children’s treatment plans. With help from the NFED, you can get your children the dental care they need in 2022.

Also, if you need a wig, a cooling vest, an air conditioner, or stipend for genetic testing, you can apply to the Treatment Assistance Program for funding.

Learn More

Kickstarting Research

A doctor is placing a skin biopsy in a test tube held by a researcher. The woman affected by EEC syndrome who provided the biopsy watches.
Diane Carlson (left) is one of the thousands of individuals affected by ectodermal dysplasias who has volunteered for research studies the NFED is supporting. She provided a skin biopsy for Prof. Maranke Koster’s (right) P63 research. Dr. Kathy Grange (middle) assists.

We are proud to have led ectodermal dysplasias research for the last four decades. To kick off the next decade, we will award up to $200,000 in grants for ectodermal dysplasias research! The seeds were planted last fall at our International Research Conference. Many of the investigators who came together for the event are already collaborating on projects. We look forward to funding new and ongoing research that will deepen our understanding of different syndromes and lead to treatments.

The first research that the NFED funded was for the gene identification of x-linked hypohidrotic ectodermal dysplasia (XLHED) in 1989. That $10,000 seed grant started us on the path that culminated in EDELIFE, the current clinical trial to develop an in-utero treatment for the condition. We will continue to support EspeRare and Pierre Fabre with the study, which needs 15-20 families to participate. Our role is to provide information to XLHED families. The trial is already open in Germany. We look forward to additional sites opening this year in the United States and Europe.

Learn About EDELIFE

How You Can Participate

Besides attending the Family Conference—and you are going to make this the year to attend, right?!—there will be lots of other ways for you to join the festivities. You can purchase new NFED merchandise for Ectodermal Dysplasias Awareness Month in February and take a chance on some fun, social media giveaways. Help us raise awareness of these conditions and the special people whom they affect.

We’d also like to hear about your history of being in the NFED family. How have you benefited from being in the Foundation? Do you have a great Family Conference memory? If you are interested in being interviewed or writing your experience with the NFED, please fill out this form and share your story.

Share Your Story

We look forward to an extraordinary year! Please join as we highlight our history and accomplishments and build a plan for another strong 40+ years.

2 comments on “Let’s Celebrate 40 Years of NFED Success!”

  1. 1
    Huda Saif on January 5, 2022

    I need help finding a specialized place for dental implants for my 8-year-old child, knowing that I live in the Sultanate of Oman and I do not need financial assistance, I just want a suitable place for dental implants

    1. 2
      Veronica Minard on January 10, 2022

      Hi, Huda – thank you for reaching out to us! I would highly recommend reaching out to our Director of Family and Community Programs, Kelley. You can email her directly at kelley@nfed.org. In the meantime, this blog may be of benefit and link to other helpful resources: https://www.nfed.org/blog/tips-for-finding-a-doctor-or-dentist/. Best of luck! – Veronica

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