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Welcome to the USA section of the Syngap Global Network website!

The values of the SynGAP Research Fund are collaboration, transparency, and urgency. We ask the researchers we fund and our volunteer team who work with us to live these values as we together seek a cure. 

 

Collaboration: The ~400 diagnosed patients in the SynGAP community share a painful bond, and we will help none of them if we do not work together. The SynGAP Research Fund is a member of the SynGAP Global Network, whose organizations in Australia, England, Germany, Spain, France, and Canada knit together our community and the researchers supporting it. The rare disease community includes 30m patients in the US alone.  80% of rare disease is due to faulty genes and as such may benefit from this research. As such, we have also actively sought out the insight and experience of other patient communities such as the Dravet Syndrome Foundation, EBRP, the Grace Science Foundation, as well as organizations such as Global Genes. 

 

Transparency: We are a non-profit, incorporated in the State of California, and we have made our financials, our by-laws, and our scientific advisors, as well as all of the projects we fund, public on our website. We have asked our researchers to provide regular updates on their progress, which we will also share. 

 

Urgency: Our children’s brains are being built. There is no time for delay. We are all volunteers and we are interested only in discovering, as quickly as possible, what can be done to help our children, and then doing it.