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.

A Cause Worth Fighting For!

Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!

Suzanne’s Story with EEC Syndrome

Suzanne lives in Pennsylvania with her husband, Will, and their children, Caitlin and Tyler.  Mom and son are both affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. This tenacious educator grew up never knowing that her symptoms were actually a part of a genetic disorder.  In this interview, Suzanne discusses growing up without a diagnosis, finding her…