Updated: Aug 1, 2018
The SynGAP Research Fund, Inc. (USA) was formed in June, 2018 with a private donation from a set of parents in the SF Bay Area. The stated mission of the organization is to IMPROVE THE QUALITY OF LIFE OF SYNGAP-1 PATIENTS THROUGH THE RESEARCH AND DEVELOPMENT OF TREATMENTS, THERAPIES AND SUPPORT SYSTEMS.
The SRF is currently focusing on three key activities in addition to standing up the organization.
- Diligence: engaging with leading researchers in SynGAP, Epilepsy and related disciplines around ways they can accelerate their research on SynGAP.
- Funding: reaching out to potential donors to supplement our own resources.
- Documentation: identifying a senior scientist to draft an overview report of the state of research and potential opportunities -- this is both for the public and our donors.
To stand up the organization we are working on the following:
- Filing for Tax Exemption: Now that we have incorporated we are beginning a 6-12 month process to secure tax exemption from the US Gov't.
- Building our Website: https://syngapresearchfund.com/ is not ready for prime time but we are working on it.
- Establishing Social Media Presence: @syngapfund is our Twitter, please follow us.
The tagline of SRF is Collaboration. Transparency. Urgency. In that spirit we will share all of our grants as we make them. Similarly, we are happy to have parents in the SynGAP community who have a focus on research and science work with us. We are also looking for US based lawyers and web people if anyone has time please reach out. Please get in touch at SynGAPFund@gmail.com
We are based in the Bay Area on the Peninsula, if you are ever in town, please reach out we love meeting other SynGAP families!