Planning  a party or get together is work. Planning one for people you may have never met before can be even more daunting! But not for two of our Family Liaisons who hosted our inaugural NFED @Home events. These are our newly established informal family gatherings that we hope to take place throughout the United States.

Julie Claeys
Janet Johnson

Julie and Craig Claeys in Michigan and Janet and Russell Johnson in Utah hosted @Home events for families affected by ectodermal dysplasias so they could get to know one another. Everyone shared, laughed, ate, drank, played, and had a great time at these two events.  The Claeys invited people to their home and the Johnsons hosted their event at their church and school.


“It was like having family over and you don’t want them to leave!” Julie said.

Jill Radley

NFED Family Liaison Jill Radley has been a pioneer in bringing families together in her area for several years. She has hosted several family gatherings in Ariz. However, they were not called an NFED @Home event at the time.


We thank the Claeys, Johnsons and Radleys for opening their hearts and “homes” to their NFED family. We know from experience that magic happens every time our families get together. But it takes wonderful volunteers like these three to create the opportunity for it to happen. Thank you!


Janet Johnson (left) talks with a family at her @Home event in Utah.


This lively group loved the @Home event in Michigan that Julie Claeys hosted.


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