CURE SYNGAP1 PODCAST aka SYNGAP10

Saturday, December 20, 2025 - Five days till Christmas, 11 days left to raise funds to CURE SYNGAP1 AES was exceptional in many ways, here are a few: Rare & SYNGAP1 were both very visible, posters with our Logo and names of staff were seen! Posters: https://www.linkedin.com/posts/graglia_syngap1-curesyngap1-activity-7408291479187755008-rMru Our conference was standing room only and had investors!  Even got a mention in their research report! https://www.investing.com/news/analyst-ratings/cantor-fitzgerald-reiterates-overweight-rating-on-camp4-therapeutics-stock-93CH-4403281 ProMMiS Launch was a massive win for patients.  Collaboration. Praxis and Lundbeck recruited for exciting drugs and CAMP4 talked about their ASO and recruiting next year. Our community's presence was felt well into AES. Aaron's post on growth! https://www.facebook.com/aaron.j.harding.5/posts/pfbid0231DtMVUtkZa4eXLv8C8qbf4xEN95aRP1xJ8sGNNvun7aDuUyZVatMWUjjigdXfg1l    Pre-register now for Denver: cureSYNGAP1.org/Pre26   Fundraising. We are YTD $1.68M which is below $1.86M in ’23 and $1.97M in ’24.  We need to really double down on fundraising for the next two weeks and into next year.  Support our campaign at curesyngap1.org/unlock   ACTION ALERT 🚨Call Bernie and urge him to help children at NO COST to the USG by supporting the PRV. (202) 224-5141 https://www.linkedin.com/posts/christine-waggoner-71b1555_mibagents-makeitbetter-osteosarcoma-activity-7408186315592085504-A6AY    PUBMED is at 58 for the year, that is +4 over our best year, last year.  187 since 2022, more than half of our SYNGAP1 Knowledge (365) has been created in the past 4 years! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date    SOCIAL MATTERS 4,519 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,490 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $6.38 on 19 Dec. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ   Like and subscribe to this podcast wherever you listen.  https://curesyngap1.org/podcasts/syngap10/ Episode 192 of #Syngap10 #CureSYNGAP1 #Podcast

#CyberMonday, December 1, 2025. Week 49.   Go buy The Monster Inside My Brother by Nicole Ciccone illustrated by Lena Bardy. Bookshop: https://bookshop.org/p/books/the-monster-inside-my-brother-nicole-ciccone/8986b9c64d1ebe5d?ean=9798999980700&next=t& Barnes and Noble: https://www.barnesandnoble.com/w/the-monster-inside-my-brother-nicole-m-ciccone/1148368158  Amazon: ​​https://a.co/d/imfxmwG    See you Thursday at the CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/   SOCIAL MATTERS 4,474 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $3.80 on 26 Nov. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ   Episode 191 of #Syngap10 #CureSYNGAP1

Happy Thanksgiving… Thursday, November 27, 2025. Week 48.   Continued from #S10e189…   And the AAV Paper (https://pubmed.ncbi.nlm.nih.gov/40988338/) from #S10e187… https://curesyngap1.org/podcasts/syngap10/clinical-research-ai-dx-nl47-survey-autism-press-6-days-to-register-for-syngap1conf-s10e187/   https://curesyngap1.org/blog/ Issac’s story, Transmitter reprint, Scramble 4 write up and JK on #Autism, #MustRead   https://curesyngap1.org/resources/webinars/ 119 - 112 Register for livestream of the conference, AAV from Allen Inst., dos en espanol, Missense, Unlock and Rare-X for ProMMiS.   https://curesyngap1.org/podcasts/syngap1-stories/  A gold mine have you listened to #38, the Virginie Pod, really must listen, she is our leader. https://www.linkedin.com/posts/graglia_syngap1stories-syngap1-syngap1storiesty-activity-7387203351907708928-liNL    CLINICAL TRIAL & GENETIC MEDICINE CORNER Example of Ultragenyx FAST Angelman follow on trial to look at other ages and genotypes, key message, never give up. https://www.linkedin.com/posts/cureangelman_the-global-aurora-study-will-enroll-approximately-activity-7389647402690957312-Bihi Congrats to Novartis on approval of the first Gene Therapy to Cure SMA! https://www.linkedin.com/posts/graglia_sma-fdaapproval-rarediseaseinnovation-activity-7398939783005347840-Ocd_ Remember Spinraza was approved in December 2019.   TODOS Sign up for Citizen Health: https://www.citizen.health/partners/srf USE YOUR ICD-10 F78.A1 #S10e185 https://www.youtube.com/watch?v=dale0NbxDpU Go to CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/   SOCIAL MATTERS 4,468 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $3.62 on 26 Nov. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ Episode 190 of #Syngap10 #CureSYNGAP1

Happy Thanksgiving… Thursday, November 27, 2025. Week 48.   https://curesyngap1.org/clinical-trials/ Emerald from Praxis for Relutrigine and DeeP Ocean from Longboard for Bexicaserin.  Check them out, screen for both.  See what you can do!   Hectic with #MIHealthSummit, Tony at home, an NHS visit, Ultrabootcamp, not to mention prepping for the most elaborate conference yet!  MI https://www.linkedin.com/posts/raymond-puerini_medtech-patientengagement-mihealthsummit-activity-7392679496266436608-7kWo  Bootcamp https://www.linkedin.com/posts/graglia_rarebootcamp-syngap1-precisionmedicines-activity-7396249525214031872-RvsX    ProMMiS - Meet committed clinicians, get great care and build the future of SYNGAP1 clinical medicine. Upcoming Stanford enrollment dates: December 10–11, 2025: 2 slots, February 25–26, 2026: 2 slots, May 27–28, 2026: 2 slots to enroll email [email protected]      GIVING TUESDAY 1 week to go.  Set up an Unlock fundraising page now and send it out BEFORE Tuesday December 2nd! cureSyngap1.org/unlock or for more info: https://curesyngap1.org/podcasts/syngap10/time-to-unlock-their-tomorrow-raise-funds-camp4-our-name-s10e188/ Video: https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-activity-7399492685474009088-DXWI   CONFERENCE - Record Headcount over 20% increase: Scientific: 237 & Caregiver Connect: 180 (of which 26 patients) - Agendas are up: https://curesyngap1.org/calendar/cure-syngap1-conference-2025-hosted-by-srf/ - Volunteer with us: [email protected]     PAPERS PUBMED at 52, and low. Clinical research! 181 / 359 = more than half of the knowledge on S1 in the past 4 year! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&sort=date   Movement disorder comparison: https://www.medrxiv.org/content/10.1101/2025.11.04.25339413v1.full.pdf   SLEEP - SRD Patients are the worst https://pubmed.ncbi.nlm.nih.gov/41138043/ aligned with CSH paper https://pmc.ncbi.nlm.nih.gov/articles/PMC8472329/    TODOS Sign up for Citizen Health: https://www.citizen.health/partners/srf USE YOUR ICD-10 F78.A1 #S10e185 https://www.youtube.com/watch?v=dale0NbxDpU Go to CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/   SOCIAL MATTERS 4,468 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $3.62 on 26 Nov. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ Episode 189 of #Syngap10 #CureSYNGAP1

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