My Nonprofit Reviews

SynGAP Research Fund is accelerating treatments and bringing the SynGAP patient community together. From the informative webinars to the weekly family meetings; from the grants given for specific research projects to the participation in umbrella organizations like COMBINEDBrain and Rare Epilepsy Network, the SRF team is committed to alleviate suffering of their kids affected by a rare disorder called SYNGAP1-Related Disorder (among other similar-sounding names, like SYNGAP1-Related Intellectual Disability, SYNGAP1-Related Developmental and Epileptic Encephalopathy, and even SYNGAP1-Syndrome (ICD-11).

This is the hardest working, most effective rare disease organization. SRF is making strides by supporting researchers, by connecting families, and by working hard day and night. From the identification of people with Syngap1 disorders to developing treatments and cures, from basic research to clinical endpoints, from connecting researchers to being a listening ear for families, from fun fundraisers to important informational webinars, the Syngap Research Fund is moving mountains to improve the lives of people and families affected by a faulty Syngap1 gene. Over $2M granted already. The volunteers in this organization cooperate for a better future.

This group is dedicated to moving forward treatments for people with a Syngap1 disorder. They connect researchers in academia and biotech, they support specific grants to move forward points that need clarity. They are currently working on measurable outcomes so that once the precision genetic treatments are ready to be tested, there will be meaningful ways to observe progress in our unique population. I'd give 10 starts if I could. The founders, the parent board, the scientific advisory board, all are truly top-notch. They are smart and caring and generous and hard working.