Dedicated to Improving the Lives of Children, Adults, and Families Affected by SYNGAP1
We Are Bridging the Gap to Better Treatments and a Cure for SYNGAP1 Patients and Families
What Is the Syngap1 Foundation
SYNGAP1 Foundation, formerly (Syngap1), is the leading 501(c)3 nonprofit 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.
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.
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.