Three hundred brave advocates from 46 states shared their heartbreaking stories with U.S. legislators at this year’s Virtual Advocacy Day on Capitol Hill. They talked about the numerous surgeries and ongoing treatments they or their child has needed and how insurance companies won’t pay for it. With the House voting on April 4 for ELSA, find out what you can do to help.
Things to Do in the Lou at Family Conference
If you are coming to the National Foundation for Ectodermal Dysplasias (NFED) this July— and who isn’t?!— you may want to add some extra days to your trip to see the sights in St. Louis. Make it a family vacation! The NFED office is located just across the Mississippi river in Fairview Heights, Illinois. Here are our tips for where to go and what to eat when you visit our hometown.
Esteemed Dentist Dedicated 20+ Years to the NFED
We are saddened to share the news that one of our beloved volunteer dentists has died. Read how Dr. Tom Vergo donated his time and talents to the Foundation for more than two decades.
Keeping You Safe and Healthy at the Family Conference
The excitement in the National Foundation for Ectodermal Dysplasias (NFED) office is beyond wild! Finally, after two long years of not holding a Family Conference, fighting the ongoing pandemic, and social distancing, we are finally going to reunite our family. It’s critical that we do everything we can to keep you healthy at Conference. Please read what our Scientific Advisory Council and staff are asking of all who attend.
Why Women Need to Know if They Carry the Gene Variant for XLHED
For the first time, women who have the gene variant for x-linked hypohidrotic ectodermal dysplasias (XLHED) have another option to consider when they are family planning. They can choose to participate in a clinical trial called EDELIFE where researchers are testing a potential therapy in-utero on male fetuses with the condition! Find out how the condition can be inherited and how you can learn if you are a carrier.
8 Reasons to Attend the NFED Family Conference
Did you ever just want to go someplace where everyone accepts you? Then you need to go to the NFED Conference, says the Johnson family. They are “veterans” when it comes to attending Conferences. Having attended numerous events since 1998, they share their wisdom and ask you not why attend…but why not?
The NFED Continues to Expand in Its First Decade
Our conversation with NFED founder Mary Kaye Richter and her son, Charley Richter, continues as we look back at the NFED in the 1980s. They share what it took for the Foundation to grow and thrive and the people that made it happen. Read how Richter’s can-do spirit drove the NFED’s success and inspired parents to expect great things for their children.
The Baby With XLHED Who Now Sweats
Laura Reiser grew up watching her dad struggle with the heat since he couldn’t sweat due to x-linked hypohidrotic ectodermal dysplasia (XLHED). When she became pregnant with a boy who also had XLHED, she and her husband, Milo, decided to participate in research that would potentially restore their unborn son’s sweat glands. Learn how another NFED mom helped them decide to do it, how baby Bennett is doing and how it’s impacted his “Papa.”