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