WHAT WE FIGHT FOR
The DESSH Foundation was established to raise awareness of DeSanto-Shinawi Syndrome (DESSH) among the medical profession and the general public, to advance research and education related to DESSH, and to provide a support-community for patients and families challenged by DESSH.
We aim to support patients challenged by DeSanto-Shinawi Syndrome by advancing research in pursuit of a cure through awareness and fundraising.
OUR BOARD OF DIRECTORS
President and Co-Founder
VP, Treasurer and Co-Founder
Awareness Committee Chair
Fundraising Committee Chair
Chief Finance Officer
Patient and Family Committee Chair
Board Member, ex officio
OUR MEDICAL ADVISORY BOARD
DR. MARWAN SHINAWI
Professor of Pediatrics, Division of Genetics and Genomic Medicine at Washington University School of Medicine
Clinical Geneticist, St. Louis Children's Hospital
DR. AMANDA SMITH
Senior Research Investigator at Incyte, a global biopharmaceutical company focused on finding solutions for serious unmet medical needs through the discovery, development and commercialization of novel medicines.
DR. CHEOL-HEE KIM
Professor, Chungnam National University
Director, Zebrafish Center for Disease Modeling
DR. DANIEL VOGT
Assistant Professor in the College of Human Medicine’s Department of Pediatrics and Human Development at Michigan State University.
DR. ALANA SALVUCCI
Medical Dirctor of Clinical Development at Capsida Biotherapeutics.