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)

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

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