We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis!

Jack Kriz

What an amazing conference from start to finish. The conference started off with Jack
Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the NFED.  Simply amazing!

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This year, it was wonderful to see so many new families attend the Family Conference. They enjoyed meeting other new families and gleaning advice from families who have been around for a long time.

Breaking the ice.

The opening session put everyone at ease as they met new people right away.  In attendance this year, we had:

  • 126 people affected by ectodermal dysplasia in attendance
  • 95 families, 337 total attendees
  • 4 countries (Canada, Iceland, Saudi Arabia and U.S.)/ 32 states
  • 6 syndromes (9 AEC, 16 EEC, 1 Clouston, 11 Goltz, 77 HED, 13 Unknown)
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Families enjoyed the pool party.

What is conference all about?  Learning, laughing (sometimes crying) and developing friendships and new support systems which will last a lifetime.

The kids had a great time in Kays’ Kids Camp and the tweens and teens ventured out to the bowling alley and the City Museum.  There was lots of fun and laughter was had by all!

We enjoyed a wonderful anniversary celebration and honored individuals who have been critical to our 35 years of success.  Happy Anniversary NFED!



Our docs and dentists on the SAC donated  their time and expertise.


It was a packed full three days.  Sessions led by our Scientific Advisory Council and families offered something for everyone.

And how great was the grand finale?   The kids did an amazing job singing.  I do believe they are the cutest kiddos ever!  You can watch it here.


Supporting You. Supporting Each Other.

Watch our video to see more great photos from the Family Conference.

Our sights are now set on 2017 where we hope to see all of you in Washington D.C., July 20-22. Join us next year!

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One comment on “We Are Flying High!”

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    Success: The Best Kind of Revenge | National Foundation for Ectodermal Dysplasias on August 9, 2016

    […] We Are Flying High! […]

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