SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139
Talking with John Get vs Have ( • Mike and John discuss ... )
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 - givebutter.com/ALjJXJ
- Newsletter 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 curesyngap1.org/resources/mov...
- Sprint events. Volunteer. Etc.
- Hope drove across the country
Fundraiser givebutter.com/zDUIfN
Reel / 421525020629131
Interview curesyngap1.org/podcasts/syng... #28
Share our experience to make broader knowledge
- FB: facebook.com/groups/syngap/
- CHOP is at 99! endd@chop.edu
- Cinci is still recruiting too.Info - drive.google.com/file/d/1jLAI... Survey - redcap.research.cchmc.org/sur...
Learn from each other & scientists
- curesyngap1.org/podcasts/cafe...
- Coming soon: Missense Server is Awesome, Frogs too.
- NAL: curesyngap1.org/blog/drug-rep...
- Remember new families have resources too! syngap.fund/Resources
I’m learning too! Just accepted to #LeadersLink of #FasterCures!
- Pressmilkeninstitute.org/article/l...
- X x.com/JMGraglia/status/178277...
- LinkedIn / graglia_please-join-us...
SOCIAL MATTERS
- 979 Subscribers on KZitem. / @curesyngap1
- 3,529 Subscribers on LinkedIn. / curesyngap1
- 9,846 Followers on Twitter / curesyngap1
Podcasts, give all of these a five star review!
SRF Channel - 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
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