SRF is a “Get-to…” not a “Have-to..”  Do something & Go big.  #S10e139

SRF is a “Get-to…” not a “Have-to..”  Do something & Go big.  #S10e139

Talking with John Get vs Have (https://www.youtube.com/watch?v=J5oBo9zcRUE) SRF is the same: - Raise Funds to Change the Future - Volunteer, contribute to a larger effort - Connect with other families - Share our experience to make broader knowledge - Learn from each other and scientists

Raise Funds #Sprint4SYNGAP 2024 syngap.fund/sprint24 - https://givebutter.com/ALjJXJ  - Newsletter https://mailchi.mp/curesyngap1.org/sprint4syngap?e=8531ca92fd   - $197k, 521 donors  - See you Saturday, enjoy it.  - It’s a get to, people get to support our incredible efforts.

Volunteer ACTION IS THE ANTIDOTE TO DESPAIR - Joan Baez  - State Reps - May 3rd!  - Advocates - Jackie Kancir and Jess Johnson are killing it.  - Many other roles   - DEI too.

Connect with other Families  - Jaxon Movie is up https://curesyngap1.org/resources/movies/  - Sprint events. Volunteer. Etc.  - Hope drove across the country   Fundraiser https://givebutter.com/zDUIfN   Reel https://www.facebook.com/reel/421525020629131    Interview https://curesyngap1.org/podcasts/syngap1-stories/ #28

Share our experience to make broader knowledge  - FB: www.facebook.com/groups/syngap/   - CHOP is at 99! endd@chop.edu   - Cinci is still recruiting too. Info - https://drive.google.com/file/d/1jLAIe6FTNRGlhPZpouDlYJNPv-d6ICNW/view?usp=drive_link; Survey - https://redcap.research.cchmc.org/surveys/?s=4CYCNJ47RCL7HLN8

Learn from each other & scientists  - https://curesyngap1.org/podcasts/cafe-syngap1/   - Coming soon: Missense Server is Awesome, Frogs too.  - NAL: https://curesyngap1.org/blog/drug-repurpose-update-1-tanganil-acetyl-leucine-for-potential-management-of-syngap1-related-disorder-symptoms/  - Remember new families have resources too! https://syngap.fund/Resources 

I’m learning too!  Just accepted to #LeadersLink of #FasterCures!  - Presshttps://milkeninstitute.org/article/leaderslink-cohort-2024-2025-fastercures   - X https://x.com/JMGraglia/status/1782778094589460812   - LinkedIn https://www.linkedin.com/posts/graglia_please-join-us-in-welcoming-the-newest-leaderslink-activity-7188548477889449987-DmAX

SOCIAL MATTERS  - 979 Subscribers on YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,529 Subscribers on LinkedIn.  https://www.linkedin.com/company/curesyngap1/  - 9,846 Followers on Twitter https://twitter.com/cureSYNGAP1

Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

Episode 139 of #Syngap10 - April 23, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1