PLAY PODCASTS
#RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200
Episode 201

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

CURE SYNGAP1 PODCAST aka SYNGAP10

February 25, 20269m 57s

Audio is streamed directly from the publisher (mcdn.podbean.com) as published in their RSS feed. Play Podcasts does not host this file. Rights-holders can request removal through the copyright & takedown page.

Original episode page

Show Notes

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 [email protected]

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

← All episodes of CURE SYNGAP1 PODCAST aka SYNGAP10