The DESSH Foundation is pleased to host its second DESSH clinic with Dr. Marwan Shinawi, Washington University School of Medicine, and St. Louis Children's Hospital. The goal of the DESSH clinic is to collect data from patients diagnosed with DeSanto-Shinawi Syndrome (DESSH), a rare genetic syndrome characterized by developmental delay, seizures, intellectual disability, and behavioral abnormalities. Data is collected over time to study the progression of DeSanto-Shinawi Syndrome. With this longitudinal patient data, we can advance research toward a cure for DESSH.

20 patients and their families from around the world, including the UK and Australia, will come to St. Louis to participate and meet other families with this rare disease. Only 150 patients have been identified with DESSH in the world and many of these families will meet someone else with the syndrome for the very first time at the clinic. Therefore we would like to host social outings with the families. Children range from age 2-18, plus parents and siblings. We are seeking donated outings, meals, and swag for our participants!

The clinic takes place at St. Louis Children's Hospital during the day on Thursday and Friday 9/28-9/29. There will be a symposium at the EPNEC conference center on Saturday morning, 9/30.