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SynGAP10 weekly 10 minute updates on SYNGAP1Author: Syngap Research Fund, 501(c)(3)
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 Language: en Genres: Business, Health & Fitness, Medicine, Non-Profit Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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It’s time to UNLOCK THEIR TOMORROW - let’s raise funds. Also: CAMP4 and our name. #S10e188
Episode 189
Sunday, 9 November, 2025
Sunday, November 9, 2025. Week 46. End of year campaign: UNLOCK THEIR TOMORROW, curesyngap1.org/unlock Why now? UNLOCK It’s giving season. Count our blessings and share what we have. CS1 has moved mountains this year: Staff, ProMMiS, etc. But we are just starting… Every single family should give and should solicit their friends. Yes, it’s a tough time. Yes, people have other causes. No (most of) your friends don’t have a SynGAPian. Miss 100% of the shots you don’t take. And remember, donors learn about what they give to, so even small donations cause huge changes in awareness. Go to our Champions page: https://curesyngap1.org/champions-of-hope/ Tony, Myla, Hattie, Jansen, Kai, Sophia, Kaylie, Gracie are at $50k+. Eight families. It’s only five at $100k+. I think we can do better. I also think we should have more participation at every level, we can’t lean on a handful of families to carry this organization. These families get something key: CURE SYNGAP1 is in it for the long run, unlike EVERYONE ELSE you are supporting. Great that you are doing schools, horses, girl scouts, etc, but the only people asking you for money right now that are going to be fighting for your kid in 5, 10, or 50 years, is CURE SYNGAP1. The only group who won’t kick your family/loved one out of our community when your SynGAPian bites one of our staff or elopes from a meeting across streets. Also us. The people who understand SYNGAP1 the best. Right here. Technicals, we could not make this easier! Take 5 minutes to build your own fundraiser or simply email friends/family/co-workers/church associates/other kids’ sports team parents/etc. It’s uncomfortable but essential. It’s so darn easy to give - 💻 ONLINE @ CURESYNGAP1.ORG/UNLOCK Use Credit Card, PayPal, Venmo, Google & Apple 📱 PHONE - Text UNLOCK to 71777, then follow the instructions. 📬 MAIL A CHECK CURE SYNGAP1, PO Box 515734 Los Angeles, CA 90051-5150 Two more questions: ?1: Aren’t we done now with CAMP4? No. Three reasons: Clock, Count, unknowns. Clinical research. Behavioral interventions. Optimal medications. Missense research. Patient discovery. Drug repurposing. Family support. Global coordination. ?2: Our name is a demand: CURE SYNGAP1, and we are not there yet. SRF suggested that funding science was enough, boy were we wrong. We need patients to be Support. Educate. Activate. Coordinate. I discussed the many ways a PAG matters in #S10e181. (I missed data & should have clinical separate, will redo.) https://curesyngap1.org/podcasts/syngap10/patient-advocacy-groups-matter-party-friday-syngap1conf-soon-elopement-s10e181/ Every single family needs to help us raise funds. Every single one. SOCIALS 4,426 LinkedIn. https://www.linkedin.com/company/curesyngap1/ 1,480 YouTube. https://www.youtube.com/@CureSYNGAP1 11k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1/ $CAMP stock is at $4.25 on 7 Nov. ‘‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ Episode 188 of #Syngap10 #CureSYNGAP1
