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

Talking with John Get vs Have (   • Mike and John discuss the realities o...  )
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/sp...
- $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/mov...
- Sprint events. Volunteer. Etc.
- Hope drove across the country
Fundraiser https://givebutter.com/zDUIfN
Reel   / 421525020629131  
Interview https://curesyngap1.org/podcasts/syng... #28

Share our experience to make broader knowledge
- FB: www.facebook.com/groups/syngap/
- CHOP is at 99! [email protected]
- Cinci is still recruiting too.Info - https://drive.google.com/file/d/1jLAI... Survey - https://redcap.research.cchmc.org/sur...

Learn from each other & scientists
- https://curesyngap1.org/podcasts/cafe...
- Coming soon: Missense Server is Awesome, Frogs too.
- NAL: https://curesyngap1.org/blog/drug-rep...
- Remember new families have resources too! https://syngap.fund/Resources

I’m learning too! Just accepted to #LeadersLink of #FasterCures!
- Presshttps://milkeninstitute.org/article/l...
- X https://x.com/JMGraglia/status/178277...
- LinkedIn   / graglia_please-join-us-in-welcoming-the-ne...  

SOCIAL MATTERS
- 979 Subscribers on YouTube.    / @curesyngap1  
- 3,529 Subscribers on LinkedIn.   / curesyngap1  
- 9,846 Followers on Twitter   / curesyngap1  

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

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