What do you hope and dream for? Is it healthy eyes, an end to skin lesions, the ability to spend an entire day in the hot sun with your friends and family, a full head of hair, the knowledge that your children – and their children – will not worry about their syndrome every single day?

“My hope is for Liam to not have to think about decisions around having kids. That no matter what, he will believe a cure is available to help his kids have more teeth and less issues with sweating.”

— Beth Orchard, mother of Liam, age 5, XLHED


“Discovering a way to end recurring skin lesions would truly be a miracle!”

— Priscilla Hernandez, mother of 11-year-old daughter, Vivian, with Goltz


“My dream is that children and families dealing with ectodermal dysplasia can live without the constant fear of ‘What if…’ That they will have a community, medically and socially, that can offer answers, support and hope!”

– Shari Ezell – mother of 17-year-old daughter, Allie, with incontinentia pigmenti


I dream of a world where no child is born with severe skin erosion and does not have to face the threat of ongoing skin infections and dressing changes.

– Ruth Geismar, mother of Ryan, AEC


“We dream of a day when a treatment will be available for our boys, Tyler and Grant. We always want them to be able to see.”

– Chris and DeAnn Huxman on eliminating corneal abrasions due to EEC (Tyler, left)


“I dream for a cure so that when my daughters have children they won’t have to go through it. I know they can handle raising children with it – but to not have XLHED would be a relief!”

– Sarah Hamilton regarding her daughters, Hazel and Addison.


What do we hope and dream for at the NFED?

A cure for every form of ectodermal dysplasia…a future free of fear and filled with confidence and hope.

Will you help us say “Yes!” to someone’s dream?

Your research gift, of whatever amount is good for you and for those you are marching for, might be the key to making our next dream come true!

Donate to Research Now View Research Brochure

Tell us in the comments below what your hopes and dreams are! We would love to hear them.

(All Forever Forward gifts will help the NFED fund more research projects, identify effective treatments, pursue potential cures, support clinical trials, and continue to expand the understanding of ectodermal dysplasias, including research conferences.)

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