Bridge the Gap – SYNGAP Education and Research Foundation (501(c) 3) is a non-profit organization whose mission is to serve, educate and fund research for families coping with the effects of SYNGAP1 mutations. The leading organization advocating and raising funds for research and treatments for SYNGAP1. Our international outreach for SYNGAP1 children gathers critical information, which is needed to drive research towards more immediate therapeutic solutions. Bridge the Gap-SYNGAP mission is to improve the quality of life for people affected by SYNGAP1, provide family support, accelerating research and raising awareness so that every family and every child with SYNGAP1 can provide information that can guide us to a cure.
In 2014, Monica Weldon became the Founder, President and Chief Executive Officer of Bridge the Gap – SYNGAP Education and Research Foundation. The foundation was established soon after Monica’s son Beckett was diagnosed with a SYNGAP1 mutation in 2012. He was the first child identified at Texas Children’s Hospital Genetics Clinic and was one of 6 individuals in the world identified at the time. Since its inception in September of 2014, the organization has grown rapidly because of the tireless efforts of the volunteer board of trustees and parents. In May of 2015, the foundation and scientific advisory board published the first combined descriptive summary of SYNGAP1 mutation published by the National Organization of Rare Disease.
BTG is partnering with several on-going research studies across the globe that are aimed at understanding epilepsy and autism spectrum disorders. We are supporting studies focused specifically on epilepsy, autism and are currently in the stages of drug discovery and translational science. In April 2016, the foundation was awarded by the National Organization of Rare Disease and the US Food and Drug Administration, the first and largest Natural History Study and Registry for SYNGAP1 (MRD5). This five-year project will produce shared specific data about SYNGAP1 mutations with researchers who study SYNGAP1 to find better treatments. In 2018, BTG had our Second International SYNGAP1 Conference, our scientists called attention to the importance of the full range of research in the scientific discovery process and emphasized that innovation often comes from early-career scientists, while building solid relationships with the patient community.
In 2018 a collaboration began between scientists and our patient families that helped to further the understanding of the underlying causes of Sensory Processing Disorder in SYNGAP1 patients. In 2019, BTG released new data that includes Pediatric Quality of Life, Burden Data and current demographic data from our SYNGAP1 Registry. We currently have four SYNGAP1 Centers of Excellence and one International SYNGAP1 Clinic.
BTG’s future focus is to continue to engage the patient community, support ongoing education initiatives and continue to build a robust SYNGAP1 database to support research.
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