Upcoming Events
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
RARE ART SHOW & AUCTION
In honor of Rare Disease Day, The DESSH Foundation hosted its Rare Art Show and Auction featuring original works by artists with DeSanto-Shinawi Syndrome. The event raised awareness and funds while showcasing the creative talents of our DESSH heroes! To view the complete 2025 show gallery, click here.
