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