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Over 1,600 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This weekly podcast is for them. -A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of CURE SYNGAP1. CURE SYNGAP1 is a parent-led public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://cureSYNGAP1.org
Episodes
Monday Sep 08, 2025
Monday Sep 08, 2025
Sunday, September 7, 2025. Week 37.
Why does CURE SYNGAP1 aka SRF matter? Do PAGS make a difference?
Heck yes.
- Empower Families - Support. Educate. Activate. Coordinate.
- Use Money Catalytically - Tax advantage. Pool. Manage. Make Catalytic. Focus. Manage.
- Partner with Science & Medicine - Push forward. Connect efforts. Focus on Tx. Work in Clinic.
- Leverage Ecosystem. Industry. PAGs. Superpags (CB, GG, ELF).
- 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/
- Register (97 done!)
Need to register for the conference? Do that here: cureSYNGAP1.org/Reg25
- Get a Room (Deadline 11/3 – Will sell out)
Need a hotel room? Use our block here: cureSYNGAP1.org/GATech
- Get Friday Dinner Tickets we are going to AltaToro https://altatoro.com/ (20 already sold!)
Register here: cureSYNGAP1.org/Din25
- 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
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