Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
Our NFED family gathered in Colorado, for a weekend filled with educational workshops, research updates, and dental evaluations along with hugs, laughter and some tears. Mary Fete thinks it just may have been the best yet! Read about the impact, see the photos and learn where next year’s Family Conference will be!
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…
Liliett Alarcon’s home in Cuba is filled with the joyful sounds of Caribbean music when her son is playing his drum set. But the Caribbean weather—very hot and very humid—can be tough at times for Manuel since he doesn’t sweat. Learn how Manuel is coping and how his mom. doctors and community support him.
Leah Steenson was worried and scared when her daughter was diagnosed with ectodermal dysplasia but that all changed when she found the NFED. Find out how she’s teaching her happy kindergartener to speak up for herself and explain her condition.
This month, we shine the Volunteer Spotlight on Amanda Swanson, a fourth-year dental student. Learn how a long-time NFED volunteer’s meaningful relationship with his dental patients inspired her to get involved with the Foundation and help families affected by ectodermal dysplasias.
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.
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!