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 rest of world – Poland and Australia. Not too late to take part: https://docs.google.com/forms/d/e/1FAIpQLSdAvq-muCosgCDUFNy6kHtwiFq7-YCM2SolXkVd3ZAuJITWbQ/viewform
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://donate.curesyngap1.org/campaign/sprint4syngap2025/c660255 look at these faces https://www.youtube.com/watch?v=IW7owIsdjss
Getting to know our community:
- SYNGAP1 Stories Podcast – Kathryn Helde in Episode 32 https://curesyngap1.org/podcasts/syngap1-stories/
- Cafe SYNGAP1 with Jaime https://curesyngap1.org/podcasts/cafe-syngap1/jaime/
- Sibling Story with Kallen https://curesyngap1.org/syngap-siblings/
- Danielle Williams of SRF AUS Why Attend Cure SYNGAP1 Conference Video https://youtube.com/shorts/NmlAMVA1DB0?feature=share
- Pre-register for Atlanta https://docs.google.com/forms/d/e/1FAIpQLSdXinCAb5B1ev33wxHjaEN_zinMVF-J841PXFJ57DKKS7DASA/viewform
- Tomorrow’s Webinar #100 Impact Report (3/27) https://us02web.zoom.us/webinar/register/WN_ZRSFk6PMSWuXRpYGdQSBRw#/registration
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 https://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://greatnonprofits.org/org/syngap-research-fund-srf-syngap1
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://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families/
Podcasts, give all of these a five star review!
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 167 of #Syngap10
#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS