Why & How Do Patient Advocacy Groups Matter? Party Friday! #SYNGAP1Conf soon! #Elopement #S10e181

Sunday, September 7, 2025. Week 37.

Why does CURE SYNGAP1 aka SRF matter?  Do PAGS make a difference?

Heck yes.

1. Empower Families - Support.  Educate.  Activate.  Coordinate.
2. Use Money Catalytically - Tax advantage.  Pool.  Manage.  Make Catalytic.  Focus.  Manage.
3. Partner with Science & Medicine - Push forward.  Connect efforts.  Focus on Tx.  Work in Clinic.
4. Leverage Ecosystem.  Industry.  PAGs.  Superpags (CB, GG, ELF).
5. Ensure Continuity.  Our kids will outlast us.  Our energy wanes.  Life happens.  Cure SYNGAP1 never stops focusing on the biggest challenge in our lives: SRD.

Because you VOLUNTEER 

Join us: https://curesyngap1.org/volunteer-with-srf/ 

 

Gala video: Look at those faces.https://www.youtube.com/watch?v=d6dCSBq27Gc

 

Friday: Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25

 

Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/Scramble

📺 TV Interview! https://www.wspa.com/your-carolina/scramble-for-syngap-2/amp/

 

Conference is in 88 Days

https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/

1. Register (97 done!)

Need to register for the conference? Do that here: cureSYNGAP1.org/Reg25

 

2. Get a Room (Deadline 11/3 – Will sell out)

Need a hotel room? Use our block here: cureSYNGAP1.org/GATech

 

3. Get Friday Dinner Tickets we are going to AltaToro https://altatoro.com/ (20 already sold!)

Register here: cureSYNGAP1.org/Din25

 

4. SHARE BLOOD TO THE SRF BIOBANK
   🩸https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow

 

#Elopement (See #S10e178 https://www.youtube.com/watch?v=OiRnXxh0wfY)
https://people.com/boy-rescued-from-hersheypark-monorail-is-on-the-autism-spectrum-says-rescuer-11802782
https://www.facebook.com/NationalAutism/posts/pfbid02MqviB8pfYpm8QMw5ASqp9XMQY2MsL7mVcJSfeLmzsHLHBAt9bBDjfuqdg2awXAtsl 

 

3rd Scientific Congress in Spanish Oct 11 virtual 9-1:30 ET, 8-12:30 in Colombia

https://curesyngap1.org/calendar/tercer-congreso-cientifico-syngap1-en-espanol/

Register at cureSYNGAP1.org/Congreso3

 

SOCIAL MATTERS

- 4,306 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

- 1,430 YouTube.  https://www.youtube.com/@CureSYNGAP1   

- 11,286 Twitter https://twitter.com/cureSYNGAP1 

- 46k Insta https://www.instagram.com/curesyngap1/ 

 

Join Citizen Health!  Last count we were at 275!

https://www.citizen.health/partners/srf

 

Pubmed is at 42!
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&timeline=expanded&sort=date&sort_order=asc

 

NEWLY DIAGNOSED?

Next New Family Webinar - Tuesday Sept. 9th, 2025, 5 PM Pacific scheduled! https://curesyngap1.org/resources/webinars/webinar-105-syngap-research-fund-quarterly-webinar-new-syngap1-family-orientation/

 

Resources

https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families

 

Podcasts, give all of these a five star review!

https://cureSYNGAP1.org/SRFApple  

https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 

 

Episode 181 of #Syngap10 #CureSYNGAP1

#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS