April 23, 2024

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

17 minutes

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! [email protected]

- 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

...more

View all episodes

By Syngap Research Fund, 501(c)(3)

8383 ratings

April 23, 2024

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

17 minutes

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! [email protected]

- 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/