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

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
2. Know your mutation, have your genetic report.  Memorize it or get a tattoo.
3. 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
4. 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
5. 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
6. 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
7. 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.
8. 1. #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&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