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 stands as a pioneering force, holding the distinction of being the world's first organization dedicated to propelling research initiatives for the betterment of patients and families affected by SYNGAP1-related Disorders and related neurological conditions that overlap.

As a leading 501(c)3 nonprofit patient advocacy organization, our unwavering commitment centers around elevating the quality of life for those facing these challenges. Our multifaceted priorities encompass a wide spectrum of activities, including:

  • Raising Public Awareness: We actively engage in awareness campaigns to ensure that SYNGAP1-related Disorders are understood and acknowledged by the broader community.
  • Patient and Family Advocacy Initiatives: We advocate tirelessly on behalf of patients and their families, striving to improve access to resources, care, and support.
  • Educational Programs: Our educational efforts are designed to equip individuals and families with valuable knowledge and information about these disorders.
  • Scientific Research Conferences: We host conferences that facilitate collaboration among researchers, fostering innovative approaches to understanding and treating SYNGAP1-related Disorders.
  • Financial Research Support: We provide vital financial support to research initiatives, driving the quest for solutions.

Moreover, our partnership with the National Organization for Rare Disorders (NORD) has allowed us to establish and maintain the largest SYNGAP1 Patient Registry, developed in coordination with the Food and Drug Administration (FDA). This registry serves as a vital resource, supplying the crucial data required to accelerate research efforts focused on SYNGAP1-related Disorders.

Furthermore, our strategic collaborations with a diverse array of SYNGAP1 stakeholders have been instrumental in accelerating the pace of research and expanding our sphere of influence. Through these dynamic partnerships, we are steadfast in our mission to make a profound and lasting impact in the realm of SYNGAP1-related Disorders.

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Learn About Our History & Meet Our Team

In September 2014, Monica Dudley-Weldon, along with a small group of families, each with a child diagnosed with a SYNGAP1 mutation, came together to form the SYNGAP1 Foundation; formerly Bridge the Gap – SynGAP Education and Research 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.