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.
What I Want for My Grandchildren With Ectodermal Dysplasias
Sandi Hirst is a grandma who is passionately advocating for the three generations in her family who are affected by x-linked hypohidrotic ectodermal dysplasia. She doesn’t want her daughters to have to pay six figures for her grandsons’ dental care. Read this month’s Volunteer Spotlight to find out what she’s doing to help advance the Ensuring Lasting Smiles Act and why.
To Know Katherine is To Know Joy
Jodi Watts’ days as a stay-at-home mom with a baby with Goltz syndrome were filled with appointments to attend to Katherine’s many needs. The fiesty little toddler faces many challenges but continues to thrive. Find out what her parents have learned, the life-changing conference they attended, and the dreams they have for Katherine.
Learning More About Papillomas and Goltz Syndrome
Ten-year-old Maximus Sessions just wants the papillomas on his fingers, toes and knees to go away. They feel bumpy, can be itchy and sometimes they break open and bleed. They are at the top of the list of things he doesn’t like about being affected by Goltz syndrome. Read our new article to learn what papillomas are and how to treat them.
40 Years of Achievement
2021 Annual Impact Report In 1981, a new organization was formed with a simple but incredibly important purpose—to help all those impacted by ectodermal dysplasias. Now, forty years later, the National Foundation for Ectodermal Dysplasias (NFED) is recognized as the global leader on all things ectodermal dysplasia. In 2021, we provided support to nearly 10,000…
Monthly Gifts Are the Life Blood of a Nonprofit
Monthly donations accomplish so much, but not just for the National Foundation for Ectodermal Dysplasias (NFED). Consider the power and impact of a monthly giving commitment—for us, for you, and for the NFED community. Monthly donors provide the NFED with sustainability, a reliable source of monthly support, and a stronger relationship with you. Find out how you can become a Smile Maker today!
Dental Student Enjoys Collaborative and Passionate Spirit of NFED Volunteers
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.
XLHED Clinical Trial Opens in the U.S.
We have great news for XLHED families in the United States. The first site in the U.S. has opened at Washington University in St. Louis for
EDELIFE, the prenatal study for XLHED-affected boys. Learn about the treatment they are studying and how it can potentially impact XLHED symptoms, including the ability to sweat.