DESSH FAMILY CLINIC
September 28Â - September 30, 2023
St. Louis, MO
The DESSH Foundation is pleased to host its second DESSH clinic in conjunction with Dr. Marwan Shinawi, Washington University School of Medicine, and St. Louis Children's Hospital. The goal of our clinic is to collect patient data over time to study the progression of DeSanto-Shinawi Syndrome. With this longitudinal patient data, we can advance research toward a cure for DESSH.
ABOUT THE CLINIC
WHAT IS THE DESSH CLINIC?
The clinic takes place over two days where patients visit with specialist doctors who collect and store patient data to inform clinical research on DeSanto-Shinawi Syndrome. The benefits are two-fold. First, the data collected will continue to be measured through follow-up interviews and/or visits, creating a natural history of the syndrome over a long period of time. Second, the clinic will give specialists the opportunity to treat many DESSH patients, creating DESSH "experts" in their field. The clinic includes an opportunity for patients to provide blood and/or tissue samples to facilitate pre-clinical research. Finally, there is an educational conference for parents in attendance and opportunities for social events among DESSH families.
WHY PARTICIPATE?
As an entirely patient-led organization, our efforts will find the best treatments and lead to the best outcomes for those living with DESSH. Patient data is needed to advance research efforts. Dr. Amanda Smith, a member of The DESSH Foundation's medical advisory board and scientific researcher, created a Research Guide for patients and their families to learn why research is important. Your participation in DESSH research efforts will have an impact on how we manage, treat, and one day cure DESSH.
WHAT IS THE FINANCIAL COMMITMENT TO ATTEND?
The DESSH Foundation's fundraising efforts make this clinic possible. We are pleased to share that all patient visits, blood and tissue sample collection and storage, and educational conference are provided at no cost to you. No medical insurance is required, and no medical insurance information will be collected.
The cost of travel and lodging is your responsibility. Hotel room blocks are reserved near St. Louis Children's Hospital. You are free to secure your own accommodations if you prefer. Booking instructions are made available once your clinic participation is secured.