Don’t Sweat? Here’s What You Need to Know

Keeping your body cool when your sweat glands are missing or don’t work can be a daily challenge. Our new library article explains all about sweat glands and how they work – or don’t. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what’s working for them.

Remembering Joanna Daniel Nix

NFED Founder Mary K. Richter recalls the beautiful person, Joanna (Daniel) Nix. Joanna was affected by EEC syndrome and was one of the NFED”s founding families.

Life in a Raindrop

Elizabeth Hoverman has an extraordinary talent for perceiving color and expressing herself through beautiful art. Her photography has won contests and was recently celebrated during Rare Disease Week on Capitol Hill. Affected by EEC syndrome, this artist invites you to look beyond the surface – of her art and her syndrome.

Missing Fingers Bonds Three Amigos

Having missing fingers can get you bullied. It can also help you find life-long friends. Read about Tyler, Zemery and Nollan’s special friendship and how going to the NFED Family Conference impacted them.

Running the Disney Princess Half-Marathon with EEC

Caitlin Brown was skeptical when her mom, Suzanne, wanted to join her in running the Disney Half-Marathon to raise money for the NFED. But she knew, there was no telling Suzanne, who is affected by EEC syndrome, she couldn’t do something. Find out how this mom-daughter duo did.

Volunteers Needed for Ongoing AEC/EEC Research

Volunteers are needed for ongoing research to design novel therapies for the treatment of skin and cornea lesions that occur in individuals with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. The National Foundation for Ectodermal Dysplasias has supported this research led by Maranke Koster, Ph.D. at University of Colorado Denver.

Born This Way

Suzanne Brown ignored her painful eyes for years, always thinking, “I’m fine.”  But she wasn’t fine.  In 2017, she noticed that she was going to bed earlier in the evening because “my eyes were done.” Affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, Suzanne found a treatment that changed her life.