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Now Accepting

The DESSH Clinic 2024 will take place in St. Louis, MO on October 2-5. Reservations are being taken until April 30.

In The News

Feb 22, 2023

“We hope that sharing some of our triumphs and challenges can help provide hope to other families going through a similar situation.” - Emily Smith

Jan 9, 2021

“When you go to these doctor visits, and they don’t know anything. They’re like, well, here’s this Facebook group. That’s all you get with a rare disease,” says Elizabeth Hilton. “So we want to do something to change that.”

Nov. 12, 2019

"I just want more people to know about the disorder even if it helps one person think that could be their child. It can be a lonely place but the group are so helpful." - Kerry Pearce

Apr 13, 2022

"I think all moms, whether they're at work or at home, have those days where they're stressed and pulling their hair out," - Maegahn Adams

Foundation Past Events

Dash for DESSH Virtual 5k

The DESSH Foundation hosted its second awareness walk, the Dash for DESSH, virtually! While it was important to remain socially distant, it also allowed the many DESSH supporters around the world to participate! Racers were invited to run, walk, hop, bike, pogo-stick, skateboard, or supply any other mode of non-motorized transport to get the whole family involved!

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