Mill Valley, CA – March 17, 2026 – SynGAP Research Fund (SRF) has formally transitioned to the name CURE SYNGAP1, reflecting its singular mission to accelerate the development of treatments for SYNGAP1 -Related Disorders. The organization’s leadership, scientific strategy, and family-led structure remain unchanged, while the new name provides clearer alignment with its long-term commitment to therapeutic progress.
Following the path established by other successful rare disease organizations, including the Foundation for Angelman Syndrome Therapeutics (FAST) ( @cureAngelman ), the Dravet Syndrome Foundation ( @cureDravet ), the STXBP1 Foundation ( @cureSTXBP1 ), and numerous other groups such as @cureSMA , @cureKCNH1 , cureGM1, @cureCHD2 , @cureSHANK , @cureGABAa , @cureGRIN , @cureRareDisease , the organization selected a name that clearly signals urgency, focus, and a commitment to treatment development.
Founded in 2018 by parents of children with SYNGAP1 -Related Disorders, the organization has grown into a leading global funder of SYNGAP1 research. While the name has changed, the mission , leadership , and scientific strategy remain the same. CURE SYNGAP1 continues to support rigorous, patient-focused research while building the infrastructure necessary for clinical trial readiness and therapeutic development.
In 2024, the organization adopted CURE SYNGAP1 as its official doing business as name , a decision intended to reduce confusion and more clearly communicate its focus on delivering disease-modifying therapies. Aligning its name with its mission has strengthened visibility across the scientific, rare disease, and patient communities, while improving clarity for researchers, industry partners, regulators, and families navigating a complex diagnosis. Through this focused approach, CURE SYNGAP1 has continued to fund research spanning basic and translational science, drug repurposing, biomarker development, natural history studies , and patient-driven research tools.
SYNGAP1 -Related Disorders ( ICD-10 F78.A1 ) are a rare genetic disorder caused by variants on the SYNGAP1 gene that reduce SYNGAP1 protein levels. CURE SYNGAP1 has identified over 1,707 SRD patients to date, and the number grows weekly. This protein acts as a regulator in the synapses (where neurons communicate with each other). When SYNGAP1 protein levels are too low, we see an increase in excitability in the synapses making it difficult for neurons to communicate effectively. This leads to many neurological issues seen in SRD patients.
Symptoms of SRD include primarily neurological issues including autism spectrum disorder (ASD), global developmental delay leading to intellectual disability, epilepsy, hypotonia (low muscle tone), gross and fine motor delays,, and visual abnormalities such as strabismus (crossed eyes) as well as disordered sleep and gastrointestinal challenges.
CURE SYNGAP1 improves the quality of life for SYNGAP1 patients through the research and development of treatments, therapies, and support systems.
CURE SYNGAP1 was founded in the US in 2018 as a 501(c)(3) US public charity. There are sister organizations founded by local families in the UK in 2020, Europe (the Netherlands) in 2022, as well as both Australia & Latin America (Colombia) in 2023. Completely family-led, CURE SYNGAP1 is a leading funder of SYNGAP1 research having committed over $8 million in grants as of December 31, 2025.
CURE SYNGAP1’s grant program awards pilot, one-year and two-year grants to researchers and clinicians studying SYNGAP1 . Their mission is to accelerate the availability of safe and effective treatments that meaningfully modify SRD to reduce suffering for patients and their families. Current funding priorities include essential milestones for clinical trial readiness. You can learn more about CURE SYNGAP1 and their accomplishments by reading their most recent Impact Report .
For more on CURE SYNGAP1, visit cureSYNGAP1.org ; subscribe to the CURE SYNGAP1 Podcast and SYNGAP1 Stories ; and follow @cureSYNGAP1 on LinkedIn , YouTube , Instagram , Facebook , TikTok , or X .
CURE SYNGAP1 is a member of FasterCures , COMBINEDBrain , Global Genes Foundation Alliance , Everylife Foundation Community Congress , Epilepsies Action Network , Personalized Medicine Coalition , Rare Epilepsy Network , Epilepsy Leadership Council , Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA), California Action Link for Rare Diseases , American Brain Coalition , Genetic Alliance UK , Rare Disease UK , Syndromes Without a Name (SWAN UK), Jumpstart Program , Patient Worthy , Autism Brain Net , Innovation and Value Initiative , Rare Disease Diversity Coalition , Cambridge Rare Disease Network , Breaking Down Barriers , Rare-X , Mencap , IndoUSRare , The World Orphan Drug Congress , and Research America .