Be a part of our 2023 DESSH-Solution

So much can be accomplished in a year...

• DESSH patients achieved new milestones like saying their first words, walking without assistance, making a new friend, and getting their first jobs.
• DESSH caregivers pursued opportunities to find treatments, connected with one another for support, and tirelessly advocated for their special needs loved one.
• The DESSH Foundation patient community grew by 49 new patient diagnoses and held its first-ever clinic dedicated to studying DeSanto-Shinawi Syndrome.
  

Our goal continues to be to find a cure for DeSanto-Shinawi Syndrome. We made significant progress in 2022 by bringing together patients from all over the world to meet with a range of specialists at Washington University and St. Louis Children's Hospital. Specialists in genetics, neurology, psychology, and ophthalmology observed patients and began tracking this disease, establishing both a natural history of the syndrome as well as a cohort of DESSH experts. At the same time, patients donated blood and skin samples to further DESSH research in the lab.

After the success of our "pilot" clinic, The DESSH Foundation patient community realizes more than ever the importance of patient involvement. We are a vibrant community ready to participate in studies to advance treatment, however, geography, finances, and accessibility all play a role in our ability to bring together and study a global patient population. Many more families wish to attend a future clinic (and we want to host them!) but we need your help to make this possible.

Make your 2023 resolution to be a part of our DESSH-Solution!