Time to Lean In FEROCIOUSLY on Clinical Trial Readiness–Frazier CHOP/CHCO will you say Yes? #S10e168
Wednesday, April 9, 2025 – Week 15
Condolences to the Brimsek family and thank you John & Tobi for all your support. We just shared an interview with our board member and John’s son-in-law, Eric Moulton https://cureSYNGAP1.org/Stories
Trip Report, two crazy days. Many takeaways. Trials may be coming soon. If there is a trail, sign up. Every time. khuba@jcu.edu
Do the Frazier Study and do the follow-ups! https://curesyngap1.org/eye2 Global as well. Australia, UK, Canada, please help.
We are busy too! DiMe announcement just came out https://www.linkedin.com/posts/curesyngap1_new-project-announcement-children-with-activity-7315615778366537728-c-gU
Census is 1,581! https://curesyngap1.org/blog/syngap1-census-2025-update-q1/
Impact report has a webinar! https://cureSYNGAP1.org/Impact
Both featured in Newsletter #44 – https://cureSYNGAP1.org/NL44
Monday 4/14 we have a webinar – Natural History & Clinical Trial Readiness – with Dr. McKee https://cureSYNGAP1.org/Jill
We have one space available in Colorado on May 20, 2025, email Lauren@curesyngap1.org to sign up.
Other blog about the CB Roadshow, please join us there
https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/
And the Polish Community speaking out about ASO trials:
https://curesyngap1.org/blog/aso-choice-for-hope-syngap1-voices-from-poland/
#Sprint4Syngap 2025 is in one month! Start or join a team and fundraise!
https://curesyngap1.org/sprint25 look at these faces, $66,383
https://www.youtube.com/watch?v=IW7owIsdjss
Bowie – Our funding goes far:
https://www.eurekalert.org/news-releases/1078836 remember in July 2022 https://www.eurekalert.org/news-releases/960181
Also see this from CZI, featuring SYNGAP1 in Dr. Willsey’s work https://www.czbiohub.org/life-science/unlocking-biology-autism/
PubMed is at 17 YTD, 324 in total (trending to 52+, but I’m not as confident)
VOLUNTEER
Join us: https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
– 3,996 LinkedIn. https://www.linkedin.com/company/curesyngap1/
– 1,334 YouTube. https://www.youtube.com/@CureSYNGAP1
– 11,391 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 168 of #Syngap10
#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS
