When nine-year-old Keira and her mom, Tara, realized Maryland lawmakers hadn’t signed on to support the Ensuring Lasting Smiles Act (ELSA), they took action. With no meetings scheduled, they hit Capitol Hill, shared Keira’s powerful story, and made a big impact. Read about their bravery and how lawmakers took notice. Plus, find out creative ways you can advocate for ELSA.
Kristin Matus-Kelso Joins NFED Staff
Meet Kristin Matus-Kelso, our new Family and Community Programs Coordinator! With 20 years of personal experience in the ectodermal dysplasia community, Kristin is no stranger to the NFED.
NFED Partners with The Aspen Group to Provide Free Dental Care
The National Foundation for Ectodermal Dysplasias (NFED) has been collaborating for over a year with The Aspen Group to create a charitable referral connection for families. We are pleased to announce the formal launch of the Smile Bridge program to provide 15 identified patients free clinical dental care, to include implants, up to their age of 22.
Discover a Newer Syndrome: TSPEAR-related Ectodermal Dysplasia
Never heard of TSPEAR-related ectodermal dysplasia? You’re not alone! It’s one of the more rare and newer types. Read this blog to learn more. Two moms share their honest, real-life stories about getting a diagnosis, navigating symptoms like missing teeth and overheating, and finding support.
Jamie’s Decade of Sweat for Her Son
What began as one mother’s determination to raise awareness for her son’s rare condition has now grown into a beloved community event. This year marks the final Sweat It Out 5K fundraiser for the NFED, and we’re celebrating Jamie and her family’s dedication to raising awareness for their son, Nicholas, who was born with XLHED.
Colt’s Small Dentures Make a Big Difference
Meet Colt, a little boy in Texas with a big smile. He’s the fourth generation in his family to be affected by x-linked hypohidrotic ectodermal dysplasia. From not sweating in the Texas heat to wearing custom-made dentures, his journey is filled with daily challenges. Read how the dentures have changed Colt’s life and how his mom is leading “Team Colt.”
2024 Impact Report: Together We Did More
See the incredible impact you helped make in 2024! From growing global connections to life-changing smiles and advocacy wins, our latest blog highlights the 2024 Impact Report. Don’t miss this inspiring look back!
ELSA Has Been Reintroduced in the 119th Congress!
All of our advocacy, dedication and background work have finally paid off! We are excited to announce that the Ensuring Lasting Smiles Act (ELSA) was reintroduced on Thursday, May 8th in both chambers of the 119th U.S. Congress. House Bill: H.R.3277 Senate Bill: S.1677 We are extremely thankful for our dedicated bill leads: Senator Tammy…