SynGAP10 weekly 10 minute updates on SYNGAP1

https://feed.podbean.com/syngap10/feed.xml

29.4K

Downloads

167

Episodes

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

6 days ago

Global CTR Survey, Two New PRs, Sprint4Syngap Hype & Community Voices - #S10e167

6 days ago

Wednesday, March 26, 2025 – Week 13

#S10e166 was remarkable, #UnMetNeed https://www.youtube.com/watch?v=rut1q0LzdtA, with almost 600 views this is the best S10 episode, ever. Don’t miss it, or the comments. Feel free to add to them!

One of the things we did was make a CTR Survey, we have 130+ respondents, half US, half ROW - Poland and Australia. Not too late to take part: https://forms.gle/tx5CUWXiQMDcJhHA8

Since CHCO PR in #S10e164, we have had two more: Dallman & Sohal

PR36 for GI meds: https://curesyngap1.org/blog/julia-dallman-awarded-grant-for-syngap1-research/

PR37 for Cognition meds: https://curesyngap1.org/blog/dr-vikaas-sohal-ucsf-receives-syngap-research-fund-grant-for-syngap1-therapeutic-strategies/

#Sprint4Syngap 2025 is in one month! Start or join a team and fundraise!

https://curesyngap1.org/sprint25 look at these faces https://www.youtube.com/watch?v=IW7owIsdjss

Getting to know our community:

- Syngap Stories Podcast - KAH in Episode 32 https://cureSYNGAP1.org/Stories

- Cafe SYNGAP1 with Jaime https://curesyngap1.org/podcasts/cafe-syngap1/jaime/

- Sibling Story with Kallen https://cureSYNGAP1.org/Sibling

- DW of SRF AUS https://www.facebook.com/reel/1345989426605772

- Why Attend Cure SYNGAP1 Conference Video https://cureSYNGAP1.org/Pre25

- Tomorrow Webinar #100 Impact Report (3/27) https://cureSYNGAP1.org/IR24

PubMed is at 13 YTD, 321 in total (trending to 52+, but I’m not as confident)

https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&timeline=expanded&sort=date&sort_order=asc

Jillian McKee and CHOP team paper on SYNGAP1 now in Genetics in Medicine (https://www.sciencedirect.com/science/article/abs/pii/S1098360025000668) but you can get the Preprint: https://www.medrxiv.org/content/10.1101/2024.10.02.24314452v1.full.pdf

This paper was built on Citizen Health data, remember to sign up/refresh, early and often: Citizen Health - https://www.citizen.health/partners/srf or http://curesyngap1.org/citizen

Bio-Repository and Roadshow Dates

https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit#slide=id.g32f5fa46d32_0_3

Thank you for the 15 glowing reviews of SRF on Great Nonprofits!

https://www.cureSYNGAP1.org/GNP

VOLUNTEER

Join us: https://curesyngap1.org/volunteer-with-srf/

SOCIAL MATTERS

- 3,971 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 1,311 YouTube. https://www.youtube.com/@CureSYNGAP1

- 11,427 Twitter https://twitter.com/cureSYNGAP1

- 46k Insta https://www.instagram.com/curesyngap1/

NEWLY DIAGNOSED?

New families have resources here! https://syngap.fund/Resources