Dedicated to Improving The Lives of Families Affected by SYNGAP1 & Related Overlapping Neurological Disorders

The SYNGAP1 Gene: Seeking the Genetic Link to Treatments in Related Neurological Disorders

What Is the Syngap1 Foundation

The SYNGAP1 Foundation is the leading 501(c)3 nonprofit patient advocacy organization dedicated to improving the quality of life for patients and families affected by SYNGAP1 & related overlapping neurological disorders.

Our priorities include raising public awareness, patient and family advocacy initiatives, educational programs, scientific research conferences, and financial research support. 

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.

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Learn About Our History & Meet Our Team

In September 2014, Monica Weldon, along with a small group of families, each with a child diagnosed with a SYNGAP1 mutation, came together to form Syngap1 Foundation – SYNGAP Education and Research Foundation; DBA SYNGAP1 Foundation.

United by their common bond, it drove their desire to raise awareness and search out treatments to improve the quality of life for their children.