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=d6dCSBq27GcFriday: Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25Scramble 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 Dayshttps://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/Reg252. Get a Room (Deadline 11/3 – Will sell out) Need a hotel room? Use our block here: cureSYNGAP1.org/GATech3. Get Friday Dinner Tickets we are going to AltaToro https://altatoro.com/ (20 already sold!) Register here: cureSYNGAP1.org/Din254. 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-11802782https://www.facebook.com/NationalAutism/posts/pfbid02MqviB8pfYpm8QMw5ASqp9XMQY2MsL7mVcJSfeLmzsHLHBAt9bBDjfuqdg2awXAtsl 3rd Scientific Congress in Spanish Oct 11 virtual 9-1:30 ET, 8-12:30 in Colombiahttps://curesyngap1.org/calendar/tercer-congreso-cientifico-syngap1-en-espanol/Register at cureSYNGAP1.org/Congreso3SOCIAL 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/srfPubmed 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/Resourceshttps://curesyngap1.org/syngap1-resources-for-newly-diagnosed-familiesPodcasts, 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