In 2021, we convened leaders in the medical and scientific community to envision and outline a research initiative for the next several years for the NFED. Read how scientists, care providers and patient advocates have been working together in four key areas, what they plan to achieve and what it means for the ectodermal dysplasias community.
All Things Family Conference
On February 15, I had the pleasure of joining some new and returning families on a webinar to answer all of their questions about the NFED Family Conference, which will take place July 14 – 16. If you weren’t able to join us at the webinar, I want to share some of the great questions…
Longing for a Community of People Who Understand
Nicholle was searching for someone who understood what it’s like to always smile with your lips closed so people don’t see your missing teeth. Who know how frustrating it is to visit dentist after dentist trying to find someone who actually wants to treat you. Were there adults out there who know the pressure of trying to find more than $30,000 just so you can have teeth to bite into chicken with? Read her story to learn about her search and how she’s relieved to no longer feel so alone.
Get Ready for Ectodermal Dysplasias Awareness Month
February is Ectodermal Dysplasias Awareness Month. Learn more about what the NFED is doing to raise awareness and how you can join the fun!
How to Turn an Idea into Money for the Mission
Let’s work together during Ectodermal Dysplasias Awareness Month to fundraise! We can help you brainstorm and plan an activity or an event. You can also download tool kits we have to make it easy. Are you ready to plan some fun for a good cause?
Caring for Our HED Baby Down Under
Our story of parenting our son, Ruben, during his first year is one of instinct and intuition, as we didn’t know until 16 months that Ruben’s collection of features amounted to something called hypohidrotic ectodermal dysplasia (HED). There’s no known ectodermal dysplasia in our families. We’d been asking all the right questions about our fluffy-haired, dry-skinned, hot-bodied babe, but it wasn’t until I mentioned our son’s toothlessness to his older brother’s dentist, that an answer was offered.
The Smile That Means The Most to Me
Jayden Clark’s skin as a baby was so fragile at one point it caused a life threatening infection. Even small brushes of his skin could cause it to breakdown. Now 19, Jayden is a thrill seeker! Learn more about his extensive medical journey, his passions and the special message he has for others with ectodermal dysplasias who find it hard to smile.
Remembering Mary K. Richter With Great Love
Our hearts are heavy. The matriarch of our National Foundation for Ectodermal Dysplasias (NFED) family, Mary K. Richter recently died. We know this has come as a shock for our community. Amidst our profound sadness, join us as we remember this incredible woman.