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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Friday May 14, 2021
Friday May 14, 2021
SYNGAP10 - Ep. 10 - 14 May 2021 - Scales, Grands, Ciitizens, Kayo, iPSC
- Validated Scales
- Congrats to the ORCA Team at Duke https://syngap.fund/orca
- Join Dr. Frazier to learn more about the NET www.syngapresearchfund.org/families/resources/webinars
- Grand parents article https://syngap.fund/grand
- Thank you Barbara for this article https://www.syngapresearchfund.org/post/loving-a-grandchild-with-syngap1
- Join the Group there is a link in the article - Peer connection is so key
- Ciitizen
- US sign ups continue! Every patient matters/. https://www.ciitizen.com/syngap1/
- International is open! Same link, but you must collect and upload.
- Ashley Evans, the co-founder of SRF, gave an interview with Kayo - https://Syngap.fund/Kayo
- IPSCs - We are in the home stretch of accelerating treatments via making iPSCs available
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