Katherine Watts is a two and half year old little girl in Virginia who’s going places. Figuratively and literally. This little lady is in constant motion and is also quite the fighter. Since she was in the womb, she’s had a team of doctors who care for her many complex symptoms caused by Goltz syndrome. Learn about her challenges and what her parents had to learn quickly.
Families Educate 50 Doctors and Students About Their Unique Ectodermal Dysplasias Symptoms
Learning about rare conditions like ectodermal dysplasias in a medical journal article or textbook is certainly valuable for medical professionals. But, getting to meet eight individuals with seven different types of ectodermal dysplasias all in one morning is a unique and extraordinary opportunity! More than 50 dermatology professionals at Saint Louis University got that chance thanks to our families.
Celebrating 40 Years with Our Family
The 2022 NFED Family Conferece was a great success. Every year, the NFED invites the families it serves to convene at the conference to learn and most importantly, to connect. We laughed, we cried, we danced, and we can’t wait to see you next year!
40 Years of Support
Andrew James’ first year of life was traumatic, requiring many ER visits for unknown reasons.
When his parents finally had a reason for their baby boy’s health challenges, ectodermal dysplasia, they turned to the NFED for support.
The NFED is proud to have supported the James family and other families like them for 40 years!
A World Where Families Are Fierce and Strong
Gavin Cochran’s KID syndrome diagnosis leads a Montana family on an amazing journey where the typical milestones of childhood are huge victories. Read how the spirited six-year-old handles deafness, missing teeth, lack of vision and other medical challenges and where his parents found the support they needed.
How Powerful Storytelling Could Make ELSA a Law
We have the most amazing Ensuring Lasting Smiles Act (ELSA) advocates! Our contacts on Capitol Hill tell us that the reason the bill has garnered incredible support in a short amount of time is because of our grassroots efforts. It’s because families affected by congenital anomalies bravely share their personal stories with Congress. That’s exactly what happened again on Tuesday, June 21 when 314 advocates met with 49 U.S. Senate offices for the National Foundation for Ectodermal Dysplasias (NFED) Virtual Advocacy Day with the Senate.
Underrated Basketball Star with HED Excels on the Court
Jacobi Sebock’s killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.
Advocacy is Something We Are Meant to Do Together
Morgan Rigsby is the kind of mom who wants to model the behavior she wants her kids to have. That’s why she’s become a passionate advocate for the Ensuring Lasting Smiles Act. In our Volunteer Spotlight, Morgan talks about what volunteering has taught her, how she celebrates the small victories with her son, and why you need to be open to sharing your story.