CURE SYNGAP1 PODCAST aka SYNGAP10

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

Listen Later

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.
    1. Fill in the Connect Form https://curesyngap1.org/connect
    2. Have an annual call with Lauren
    3. Subscribe to the CURE SYNGAP1 Podcast everywhere and to our YouTube
    4. Know your mutation, have your genetic report.  Memorize it or get a tattoo.
    5. Sign up for our Natural History Studies.
      1. Looking forward: ProMMiS https://curesyngap1.org/prommis/ (Also helps you figure out travel)
      2. Looking back: Citizen Health https://www.citizen.health/ai-advocate/syngap1
      3. Participate in Research, get your mutation affirmed and published.
        1. Join the CB BioRepository https://combinedbrain.org/roadshow
        2. Give samples early and often, like me last week: https://www.linkedin.com/posts/graglia_syngap1-syngap-ciliopathy-activity-7441907768468451328-xhzb 
        3. Do Surveys
        4. Educate yourself, start with these two blogs.
          1. https://curesyngap1.org/blog/emerging-medicines-syngap1-related-disorders-primer-comparison-glossary
          2. https://curesyngap1.org/blog/preparing-for-syngap1-clinical-trials-what-families-need-to-know
          3. Extra Credit: Collect your EEGs.
            1. Get them from everywhere you have been (check Citizen to be sure)
            2. Keep them handy on a google drive… like this: https://drive.google.com/drive/folders/1vUMRMtnvTJJi7WEwcSrDSLArGL3vzFxH?usp=share_link 
            3. Upload them to the CB EEG Repository.  Email Lauren for info
            4. #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
            5. 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.
              1. #S10e

                2.  

                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&filter=years.2026-2026&sort=date

                 

                SOCIAL MATTERS

                4,786 LinkedIn.  https://www.linkedin.com/company/curesyngap1

                1,540 YouTube.  https://www.youtube.com/@CureSYNGAP1

                11.1k Twitter https://twitter.com/cureSYNGAP1

                45k Insta https://www.instagram.com/curesyngap1

                 

                $CAMP stock is at $4.75 on 25 Mar. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

                 

                Like and subscribe to this podcast wherever you listen.  https://curesyngap1.org/podcasts/syngap10

                Episode 202 of #Syngap10 #CureSYNGAP1 #Podcast

                ...more
                View all episodesView all episodes
                Download on the App Store
                CURE SYNGAP1 PODCAST aka SYNGAP10By Syngap Research Fund, 501(c)(3)
                • 5
                • 5
                • 5
                • 5
                • 5

                5

                85 ratings

                More shows like CURE SYNGAP1 PODCAST aka SYNGAP10

                View all
                Armchair Expert with Dax Shepard by Armchair Umbrella

                Armchair Expert with Dax Shepard

                69,622 Listeners

                SYNGAP1 Stories by CURE SYNGAP1, 501(c)(3) fka SynGAP Research Fund

                SYNGAP1 Stories

                29 Listeners

                Café SYNGAP1 by CURE SYNGAP1, 501(c)(3) fka SynGAP Research Fund

                Café SYNGAP1

                19 Listeners