It is time to get ready for clinical trials, this is how. #S10e202

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 Stay Connected to CURE SYNGAP1. Fill in the Connect Form https://curesyngap1.org/connect Have an annual call with Lauren Subscribe to the CURE SYNGAP1 Podcast everywhere and to our YouTube Know your mutation, have your genetic report.  Memorize it or get a tattoo. Sign up for our Natural History Studies. Looking forward: ProMMiS https://curesyngap1.org/prommis/ (Also helps you figure out travel) Looking back: Citizen Health https://www.citizen.health/ai-advocate/syngap1 Participate in Research, get your mutation affirmed and published. Join the CB BioRepository https://combinedbrain.org/roadshow Give samples early and often, like me last week: https://www.linkedin.com/posts/graglia_syngap1-syngap-ciliopathy-activity-7441907768468451328-xhzb  Do Surveys Educate yourself, start with these two blogs. https://curesyngap1.org/blog/emerging-medicines-syngap1-related-disorders-primer-comparison-glossary https://curesyngap1.org/blog/preparing-for-syngap1-clinical-trials-what-families-need-to-know Extra Credit: Collect your EEGs. Get them from everywhere you have been (check Citizen to be sure) Keep them handy on a google drive… like this: https://drive.google.com/drive/folders/1vUMRMtnvTJJi7WEwcSrDSLArGL3vzFxH?usp=share_link  Upload them to the CB EEG Repository.  Email Lauren for info #S10e123 https://curesyngap1.org/podcasts/syngap10/the-more-we-own-our-eegs-the-sooner-we-get-a-biomarker-simple-and-remember-to-get-dinner-tickets-for-the-conference-s10e123 Super Extra Credit:  If you have a missense, intronic or other weird mutation.  We should make a cell line which will allow further study.  These cost ~$10k each, so we need to do a fundraiser, but we can help. #S10e   SPRINT FOR SYNGAP1, EVERYWHERE – 29 days Get on the map!   https://curesyngap1.org/calendar/sprint4syngap-2026   INAUGURAL SF NIGHT OF IMPACT, CA – 63 days Join us this is our only Gala for 2026! cureSYNGAP1.org/SF26   5TH SCRAMBLE FOR SYNGAP, SC – 191 days  Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26   SYNGAP1 Awareness Must watch this episode of Kelly and Kyle.  Careful with those ASMs that challenge bone growth… https://curesyngap1.org/bones PUBMED Pubmed 2026 is at 18.  Some great papers, but will discuss later. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&amp;filter=years.2026-2026&amp;sort=date   SOCIAL MATTERS 4,786 LinkedIn.  https://www.linkedin.com/company/curesyngap1 1,540 YouTube.  <a href='https://www.youtube.com/@