SynGAP10 weekly 10 minute updates on SYNGAP1

Saturday, July 4, 2026 - Week 27 #Future4Ford! Already at $3,500+!  Share.  Thank you to the Family. This is the model for newly diagnosed, call us, set up a page, help us help your loved one. cureSYNGAP1.org/4Ford   CENSUS - 1,806 https://curesyngap1.org/blog/syngap1-census-2026-update-45-q2-total-1806/ Per https://docs.google.com/spreadsheets/d/1oJwMysR2wyTxe91zLlKJglNa0NySPxkBF0PRiV6mBmM/edit?u...

Friday, June 26, 2026 - Week 26 BIO was good.  Need a mouse lab to test molecules all year long.   https://www.linkedin.com/posts/graglia_syngap-syngap1-mousemodels-ugcPost-7476041484408901633-Zldd MDBR was big , not just Justin A.!  Thank you Dr. McKee, Heather and others. cureSYNGAP1.org/MDBR26Recap MERCH - 19 days left! New t-shirts!  Buy for everyone! There are some funny ones this year and th...

Friday, June 19, 2026 - Week 25 June 21 is SYNGAP1 Awareness Day, but we have made it SYNGAP1 Awareness month!  Why 6/21? Because 6p21.32  Donate!  cureSYNGAP1.org/Donate   #ThisIsOursToLose & #BurdenHopeProgress watch #S10e208 https://curesyngap1.org/podcasts/syngap10/tony-update-thisisourstolose-more-great-results-from-camp4-nightofimpact-in-9-days-s10e208/   New family email, very good, lot...

Wednesday, June 10, 2026 - Week 24 #NightOfImpact was 15 Days ago! Photos: https://jeaniehorton.pixieset.com/curesyngap1nightofimpact2026/ Impact: $800k+, of which $300 was our match.  Industry: Multiple Academics & Clinicians: Stanford, Berkeley & UCSF.  Cross-pollination is always good. Speakers: Ash, John, Kathryn, Helen Willsey & Me.  Only got a video of John, which was a mistake....

Tuesday, May 19, 2026 - Week 21 Personal Update via Syngap Stories: Page: cureSYNGAP1.org/stories41   Post: https://www.linkedin.com/posts/syngap1stories-syngap1-curesyngap1-share-7462125026276777984-OVBr #ThisIsOursToLose - Three steps to engaging friends with CURE SYNGAP1. 1. Share CURE SYNGAP1 Video - Burden, Hope & Progress - 1.1k views in 11 days. cureSYNGAP1.org/Burden https://www.linked...

Friday, May 8, 2026 - Week 19 CURE SYNGAP1 STRATEGY WORKING Our strategy has always been to derisk SYNGAP1 so that industry will invest and bring their skill and capital to bear.  We leverage donor dollars to maximize impact.  Yesterday was a great example: EARNINGS REPORTS CAMP4 1Q26 Results: $99M https://investors.camp4tx.com/news-releases/news-release-details/camp4-reports-first-quarter-2026-fi...

Wednesday, May 6, 2026 - Week 19 Congrats to GETA, CURE SYNGAP1 Australia & CAMP4 for a great weekend. https://www.linkedin.com/posts/syngap1-epilepsy-ugcPost-7457791427486466048-j8SB WEBINARS! CURE-ID Webinar tomorrow! Register now. Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID Next week, especially NY families , while you are registering, please make sure to go to this one with D...

Monday, April 20, 2026 - Week 17 CURE SYNGAP1 joins the Haystack Project in petitioning FDA for more clarity. PR: https://static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7dbb80155f46e144ae2e5/1775754168227/4.9.26+press+release+petition_vf.pdf Petition: https://static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7e016d5986e16ff09b64c/1775755288463/Letter+Head+Petition+for+rule...

Tuesday, April 14, 2026 - Week 16 Census is 1,761 https://curesyngap1.org/blog/syngap1-census-2026-update-54-q1-total-1761 Trip to Texas for UT Arlington and Cook Children's Systems innovation with Dr. Lal and Dr. Perry My post: https://www.linkedin.com/posts/graglia_raredisease-activity-7448087944466259970-MADW?utm_source=share *** Dr. Lal’s post: *** https://www.linkedin.com/posts/dennis-lal...

Friday, April 3, 2026 - Week 14 Just back from the DSC-III Kickoff Meeting!  As announced back in September 2025.  Really strong group of clinicians.   https://dsc.rarediseasesnetwork.org/patient-advocacy-groups More on DSC in #S10e184 https://curesyngap1.org/podcasts/syngap10/dsc-rdcrn-ncats-nih-press-aav-in-cell-srf-at-cb-scramble-for-syngap1-s10e184/ We will have sites at SYNGAP1 established do...

Thursday, March 26, 2026 - Week 13 Thanks for NL50 Ed!  cureSYNGAP1.org/NL50 ,  I listened to Episode 1 and, as it turns out, it was March 12, 2021 (five 5️⃣ years ago), and it’s evergreen. SEVEN THINGS YOU NEED TO DO TO BE READY FOR CLINICAL TRIALS 1. Stay Connected to CURE SYNGAP1 Fill in the Connect Form https://lnkd.in/grjd-H9H Have an annual call with Lauren Subscribe to the CURE SYNGAP1 Podc...

Friday, March 6, 2026 - Week 10 WHAT DO WE NEED $ FOR? I talked in Episode 197 #S10e197 about scientific priorities, and in Episode 200 #S10e200 about areas of activity beyond science grants.  All of this is what we need to fund. SPRINT FOR SYNGAP1 Sprint for SYNGAP is coming fast– 49 DAYS. Make a difference. Raise some money. Get on the map!  Text sprint26 to 71777 https://curesyngap1.org/calenda...

Wednesday, February 25, 2026 - Week 9 Thank you Virginie, Eric & Paulina for being in Cold DC right now with the Everylife Foundation!  https://www.linkedin.com/posts/curesyngap1_raredc2026-syngap1-curesyngap1-activity-7432425642295586816-IVDQ NATURAL HISTORY STUDY Sign up for Citizen Health cureSYNGAP1.org/Citize n and ProMMiS cureSYNGAP1.org/ProMMiS And now the Citizen Health App on iOS http...

Tuesday, February 17, 2026 - Week 8 We are flat out, thank you to the team who work full-time on SYNGAP1: VM KAH LP PP & KF. CLINICAL TRIAL DESIGN We are Angelman-like. (Rett also) https://aesnet.org/abstractslisting/differentiating-key-symptoms-of-angelman-syndrome-as-and-syngap1-via-caregiver-reported-and-us-claims-data-to-understand-differences-between-how-providers-and-caregivers-view-impa...

Thursday, February 5, 2026 - Week 6 Happy #RareDisease & #BlackHistory Month! #NaturalHistory means how this disease progresses.  Reminder: We have only been at this for 17 years, first patients were identified via Hamdan, 2009. https://pubmed.ncbi.nlm.nih.gov/19196676/ Retrospective Digital NHS: cureSYNGAP1.org/Citize n (Growing list of tools available to families, for free) Prospective Multi...

All US Families, please take the time to fill out the ProMMiS Survey. It takes 5 minutes. It's super important. Even if you haven't been there, we need your feedback. English: https://curesyngap1.org/SurveyProMMiS    Spanish: https://curesyngap1.org/encuestaProMMiS Our funding priorities for 2026 are Genetics, Behaviors & Isoforms. https://www.linkedin.com/posts/graglia_syngap1-curesyn...

Friday, January 16, 2026 - Week 3 Stoke Phase 3 Rapid Recruitment - A timeline that is ours to beat! https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-updates-timelines-completion If Marcin can make it from Poland, you can make it from where you are! cureSYNGAP1.org/Marcin CAMP4 Website is great and features Dani Williams! https://www.camp4tx.co...

SYNGAP1 Related Disorder (SRD) Key Talking Points & why we need to use them. #S10e195 Saturday, January 10, 2026 - Week 2 Here are key talking points to reference when talking about SRD.   Please let us know your thoughts about how these could be better. https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing   SOCIAL MATTERS 4,546 LinkedIn.  https://ww...

Friday, January 9, 2026 - Week 2 Big news in SYNGAP-land, Becky Quick and Matt Quayle have a beautiful SynGAPian named Kaylie & they are launching CNBC Cures! - Wonderful to have more awareness of SYNGAP1, I hope it leads to more diagnoses. - My two favorite quotes from the episode and podcast: “There is no Mission without Money”-BQ & “She has reset our whole life plan…one day I’m going to...

Friday, January 2, 2026 - Week 1 #SynGAPCensus = 1,707 https://curesyngap1.org/blog/syngap1-census-2025-update-32-q4-2025-1707/ From the Cantor Report on CAMP4  The Stockdale Paradox. The best way to succinctly describe CAMP4 and the parties driving progress in this field (Cure SYNGAP1, families, researchers) is, for anyone familiar with Jim Collins' book "Good to Great," they have f...

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 invest...

#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/imfxm...

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...

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.co...

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 (mo...