Causes: Brain Disorders Research, Health, Neurology & Neuroscience

Mission: SYNGAP1 Foundation, formerly (BTG) is the leading, 501(c)3 non-profit, patient advocacy organization dedicated to improving the quality of life for patients and families affected by SYNGAP1.Our priorities include raising public awareness, patient and family advocacy initiatives, educational programs, scientific research conferences, and financial support for research.

Results: In addition, The Syngap1 Foundation maintains the largest SYNGAP1 (MRD5) Online Natural History Data Registry in coordination with NORD and with grant funding provided by the FDA. The registry helps us provide the data needed to accelerate SYNGAP1 research. We have also formed strategic partnerships and collaborations with a diverse group of SYNGAP1 stakeholders to help accelerate the pace of research and maximize our impact.

Target demographics: Raise awareness for individuals with SYNGAP mutations and overlapping neurological disorders linked to SYNGAP1.

Geographic areas served: Washington DC & Houston, Texas

Programs: SYNGAP1 (MRD5) Natural History Study and Registry, Scientific Meetings, Family Support Conferences, and Legislative and Policy Initiatives to support community programs.