Bridge the Gap – SYNGAP Education and Research Foundation hosted the world’s First International SYNGAP1 Conference, November 30 – December 1, 2016 at Texas Children’s Woman’s Pavilion in Houston, Texas. In partnership with Texas Children’s Hospital, Baylor College of Medicine and The Scripps Research Institute Florida, the meeting brought all stakeholders together in one room, including some of the world’s most renowned neurologists as well as families.
The First International SYNGAP1 Conference began the process to close the gap of time between discovery research and clinical impact. This new approach brings together multi-disciplinary groups across the globe and also engages the patient families’ world-wide as equal stakeholders is needed to accelerate the process especially for rare disease. The meeting provided a close-knit opportunity for experts and families from 10 different countries to share information and learn from one another.
The conference had numerous goals.
First, the conference aimed to unite the international SYNGAP1 clinicians and researchers to foster collaborative approaches to identify the molecular underpinnings of the disease and potential new avenues of treatment.
Second, to support junior investigators through meeting participation and provide opportunities to build networks of collaboration with KOLs within and out of their particular research areas.
Third, to unite as many patient families that can participate to learn about SYNGAP1 (MRD5), what resources are available, for support and most importantly engage them as partners driving solutions forward. Lastly, to understand the clinical phenotypic diversity of the children amongst researchers and clinicians can provide insights into the strategies pursued.
Patients in the Spotlight
During the conference, a special session was specifically developed for clinicians and researchers to meet the patient families’ one on one.
Participants stated this was one of the most important aspects of the meeting and will be a cornerstone of future meetings.
The Foundation awarded and recognized their founding Scientific Advisory Board Members for beginning the journey to find answers.
Dr. Jimmy Holder
Chairman and Assistant Professor of Pediatrics Neurology and Developmental Neuroscience Baylor College of Medicine; Texas Children’s Hospital
Department of Pediatric Medicine & Neurology
Houston, Texas USA
Dr. Gavin Rumbaugh
Associate Professor in the Department of Neuroscience
Scripps Research Institute
Jupiter, Florida USA
Dr. Jacques Michaud
Department of Medical Genetics at the CHU