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. 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