GALA is now, #StokedAboutStoke, Go Grann, Our Villages, CHOP/NIH, More on Elopement. #S10e179
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GALA is now, #StokedAboutStoke, Go Grann, Our Villages, CHOP/NIH, More on Elopement. #S10e179
Friday, August 22nd, 2025. Week 34.
The 5th Annual Gala is happening now!
Sad to miss it? Join us in Boston or South Carolina.
Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25
Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/Scramble
Stoke Therapeutics indicates they will have a target for SYNGAP-1 in 2026!
https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-reports-second-quarter-2025-financial-results12 Aug 2025 “Lead optimization is underway to identify a clinical candidate for the treatment of SYNGAP-1 in 2026. SYNGAP-1 is a severe and rare genetic neurodevelopmental disease.”
Just over 20 FDA approved Oligos and siRNAs today. We are still so early.
Congrats to Monica E. & Grann Therapeutics, seeing a child dosed for the first time with a novel medicine was remarkable.
https://www.grannpharma.com/press-releases
The SYNGAP1 Village: How Extended Family Can Provide Vital Supporthttps://curesyngap1.org/blog/syngap1-village-extended-family-can-provide-support/
Here’s a fun topic to discuss with your family, brain donation. https://www.autismbrainnet.org/
55yo with Dravet, lots of insights, Brava to Dr. Andrade and team! https://onlinelibrary.wiley.com/doi/10.1111/epi.18613
SRF joins with CHOP, Wistar and other Philly-area research institutions with a letter to urge legislators to reject NIH cuts.
8/20/25 Letter can be viewed in SRF Public-facing drive
https://drive.google.com/file/d/1HHmCAuRYAQxb_1DtMtkQTz3H8__g9zKq/view?usp=drive_link
Philadelphia Inquirer picked up the story 8/20/25
https://www.inquirer.com/health/medical-research-institutions-reject-nih-cuts-20250820.html
More on #Elopement: Alarms, Roofs, Resonated. Keep talking to doctors about this. Post is up to 139 Votes, percentages little changed, join the conversation on FB. https://www.facebook.com/groups/syngap/posts/1734514154096968/#S10e178 - https://www.youtube.com/watch?v=OiRnXxh0wfY
Conference is in 103 Days
https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/
Pubmed is at 38!https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&timeline=expanded&sort=date&sort_order=asc
SHARE BLOOD TO THE SRF BIOBANK AT CB!
https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/
VOLUNTEER
Join us: https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
- 4,285 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 1,420 YouTube. https://www.youtube.com/@CureSYNGAP1
- 11,294 Twitter https://twitter.com/cureSYNGAP1
- 46k Insta https://www.instagram.com/curesyngap1/
NEWLY DIAGNOSED?
Next New Family Webinar - Tuesday Sept. 9th, 2025, 5 PM Pacific scheduled! https://curesyngap1.org/resources/webinars/webinar-105-syngap-research-fund-quarterly-webinar-new-syngap1-family-orientation/
Resources
https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families
Podcasts, give all of these a five star review!
https://cureSYNGAP1.org/SRFApple
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 179 of #Syngap10
#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS
United States
