February is upon us, and the National Foundation for Ectodermal Dysplasias (NFED) has a lot going on! In honor of Ectodermal Dysplasias Awareness Month (EDAM), please help us spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.

Celebrating 40 Years!

You probably know by now that we are celebrating our 40th anniversary all year in 2022. For EDAM, we will feature an interview with NFED founder, Mary Kaye Richter, and her son Charley, who discuss how it all got started, and why ectodermal dysplasias awareness was (and continues to be) so important in the early 80s.

We are so excited about two things that will make a huge, positive impact on our community.

Moving ELSA Forward

While the Ensuring Lasting Smiles Act (ELSA) is one of the most popular bills in the U.S. House of Representatives due to the very hard work of our advocates, our work is not done!

Our advocates have been tireless working to get their legislators to make ELSA a priority on Capitol Hill (find out what you can do here!), and we are planning another Virtual Advocacy Day on Capitol Hill for March 30, 2022.

We hope you will join us in getting this critically important federal legislation passed before a new Congress takes office in 2023. Learn more about our Virtual Day on the Hill and register.

Clinical Trials for Potential XLHED Treatment

A very exciting and life-changing treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED) has entered  a second phase of clinical trials. Initial studies have found that this protein treatment can restore normal sweat function and lessen other symptoms of XLHED. We are working closely with the trial sponsors and want to ensure our community is aware of this pivotal study and how they can get involved.

Sponsors of the trial are looking for women who know or suspect that they are XLHED carriers and are thinking of becoming pregnant or are in the early stages of the pregnancy. Because the treatment must be given during a specific timeframe while pregnant, I urge anyone interested in joining the study or who has questions to contact me as soon as possible at mary@nfed.org or 618-566-2020.

Emily Nelson (right), with Prof. Dr. Holm Schneider (second from left) and his team members in Germany. Emily participated in the previous XLHED clinical trial, in summer 2020.

Join the Celebration

There are many ways you can get involved this month and beyond:

  • Share our posts on social media to increase ectodermal dysplasias awareness.
  • Wear blue on February 20 and post on social media for International Ectodermal Dysplasias Awareness Day.
  • Become an NFED member and help us reach our goal of welcoming 40 new members (in honor of our anniversary) in February.
  • Join us virtually on March 30 for NFED’s Advocacy Day on the Hill.
  • Spread the word about the clinical trials to anyone who may be a carrier of XLHED. You can share this flyer with more information.
  • Consider a donation or sponsoring our 40th anniversary year so we can continue to push forward life-changing research and advocacy efforts. AND most importantly, support all of the families affected by an ectodermal dysplasia who come to us for resources and assistance. (If you are interested in a sponsorship please contact Lea Richardson at lea@nfed.org)
  • Or, host a family fundraiser and/or Facebook fundraiser and ask your network to support NFED’s life-changing work. We can’t do it without you!

Thank you for being a part of our NFED family and joining us in celebrating EDAM and all of the work our community is doing to raise awareness around ectodermal dysplasias!

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