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
This legacy page honors the pioneering spirit of the Weldon family, whose dedication laid the foundation for the SYNGAP1 Foundation, formerly known as Bridget the Gap – SYNGAP Education and Research Foundation. Beckett Weldon, the 6th individual worldwide diagnosed with a SYNGAP1 mutation in 2014, inspired the creation of the world's first organization dedicated to this cause. His twin sister, Pyper, played a crucial role as a control subject in early research efforts, including the inaugural drug discovery initiative for SYNGAP1 patients in 2016. Their mother, Monica Dudley Weldon, affectionately known as the mother of sin gap one, transformed personal adversary into advocacy, establishing a global community for families affected. Their efforts have contributed to SYNGAP1 becoming one of the most commonly studied genes associated with intellectual disability, with an estimated prevalence of 0.5 to 1% among affected children. Though the organization has concluded its mission its enduring impact includes to resonate within the international SYNGAP1 community.
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.
SYNGAP1: Voice of the Patient and Caregiver Report
SYNGAP1: Voice of the Patient and Caregiver Report
The SYNAGP1 patient focused drug development PFD report is the most comprehensive document to date describing SYNGAP1 symptoms and caregiver concerns. Developed in collaboration with patients, families and medical experts and guidance from the FDA and this groundbreaking report is built on robust data from this impact database offering and unparalleled understanding for challenges faced by the community.
The report provides an in-depth analysis of symptom burden, disease progression, and the profound impact on quality of life, highlighting caregiver priorities and perspectives on current treatments and unmet medical needs. This essential resource and powers researchers and industry leaders and drug developers with insights necessary to inform therapeutic innovation, clinical trial design and regulatory strategies.
Access the full report to gain critical insights and help shape the future of SYNGAP1 treatment, download now.
The 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.
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.