Support Simons Searchlight 2023 Campaign – Sign up!

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Dear Fellow SYNGAP1 Families,

We at the Syngap Research Fund (SRF) would like to encourage you to join the IRB-Approved Simons Searchlight Registry, where we currently have 152 families enrolled in Simons Searchlight.  (Yes, we’ve been talking about this for a while. We wrote about them in 2019!)  As a key partner of SRF, the Simons Foundation has made significant investments in the research and support of the SYNGAP1 community. They have provided iPSCs for research, supported our family meetings, support Autism Brain Net, and invest in research.  For instance, they supported Dr. Huganir’s ASO for SYNGAP1 (initially funded by SRF). This was one of the five projects they have supported.

In partnership with Ciitizen, a part of Invitae, SRF is able to gather medical records, but Simons Searchlight can gather data through validated scales such as the Vineland, ORCA & others. This eliminates the burden on SRF to host these surveys.  It also should be noted that Simons and Ciitizen have a bidirectional data sharing agreement allowing them to work together.

Additionally, Simons Searchlight values your participation and rewards survey completion with gift cards, acknowledging the time and effort put in by families. The registry is well-staffed and professional and has the best practices for data privacy and systems, thanks to the support of the Simons Foundation.

Simons Searchlight is currently available in four languages – English, Spanish, French and Dutch – and all geographies. It will soon be available in German, Italian, and Portuguese, making it even more accessible to the SYNGAP1 community around the world.

Join us in advancing the understanding of SYNGAP1 by participating in the Simons Searchlight Registry.

If you would like to learn more about the Simons Searchlight Registry and how you can participate, detailed slides in English, Spanish, French and Dutch are available for you to access below. These slides provide a comprehensive overview of the registry and the information it collects, as well as information on the gift card rewards for participation. We encourage you to take advantage of this resource to learn more about the registry and how you can contribute to the ongoing research and support for the SYNGAP1 community.

Thank you for helping us advance SYNGAP1 Research through this global collaboration

SynGAP Research Fund US, UK & EU

Overcome Syngap1

Fondo de investigacion SYNGAP

Asociación SYNGAP1 España

Syngap1 Nederland

Syngap1 Argentina

To learn more about Simons and SYNGAP1 watch this presentation by Dr. Wendy Chung, MD, PhD presenting at the Synapse Roundtable hosted by SRF and two partners in December 2021.