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CURE SYNGAP1 PODCAST aka SYNGAP10
Episode 201

#RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200

Feb 25, 2026
9:57
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Episode Description

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/Citizen and ProMMiS cureSYNGAP1.org/ProMMiS

And now the Citizen Health App on iOS https://www.linkedin.com/posts/graglia_your-advocate-is-now-with-you-in-every-moment-activity-7432260543748579328--dva

 

Board meeting… key message, we are much more than fundraising, grants and patient support.  Here is our list of non-grant projects.

 

  1. Fundraising
  2. Regulatory - Industry
  3. Regulatory - FDA
  4. Clinical Trial Readiness
  5. Standard of Care
  6. Patient Engagement
  7. Health Economics https://www.linkedin.com/posts/graglia_the-economic-impact-of-caregiving-for-individuals-activity-7431827551574011904-HvA4
  8. Global Coordination
  9. Next steps with NALL
  10. Patient Support
  11. Next steps with Nortriptyline

 

BIOSAMPLES & EEGs!

Biorepository needs more samples.  Check out the list and map here https://combinedbrain.org/roadshow/ and contribute both blood & EEGs.  The data and research we do with these samples is invaluable.  Let us know if you are going, email our CSO@curesyngap1.org

FUNDRAISING - SPRINT4SYNGAP

Sprint is April 25 - our calendar page - cureSYNGAP1.org/Sprint - has all the information in the following links:

Also, May 28, San Francisco, CA: cureSYNGAP1.org/SF26

Scramble for Syngap - 5th annual on October 3 in S. Carolina cureSYNGAP1.org/Scramble26

 

PUBMED

Pubmed 2026 is at 9, just like last week but am I seeing some amazing manuscripts! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date (Remember we had 18 in all of ‘18)

 

SOCIAL MATTERS

4,700 LinkedIn.  https://www.linkedin.com/company/curesyngap1

1,530 YouTube.  https://www.youtube.com/@CureSYNGAP1

11.2k Twitter https://twitter.com/cureSYNGAP1

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

 

$CAMP stock is at $4.70 on 24 Feb. ‘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 200 of #Syngap10 #CureSYNGAP1 #Podcast

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