#IEP: Syngapians don’t like the heat 🌡️ #BeaconOfHope #IEC2025 #CitizenHealth #DSC #CFC #S10e180

Friday, August 29th, 2025. Week 35.

5th Annual Gala was a great success! cureSYNGAP1.org/Gala5

Sad to miss it?  Join us in Boston or South Carolina. Deadline for Boston is 9/3 for tickets.

Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25

Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/Scramble

 

SRF is active in Lisbon at #IEC2025 thank you KD, JA, VA!  Hi Dr. Knowles!
We are at Booth #17 https://www.linkedin.com/posts/victoria-arteaga-26913433_syngap1-familyjourney-resilience-activity-7366951726001606657-6pcM

#Bexicaserin News: New data from the PACIFIC Study, LP352-202, Open Label Extension (OLE) will be presented at the 36th International Epilepsy Congress (IEC) in Lisbon, Portugal (Aug 30 - Sept 3, 2025).

The full results of the open label extension (OLE) of the Phase 1b/2a PACIFIC trial investigating bexicaserin for the treatment of patients with Developmental and Epileptic Encephalopathies (DEEs), will be presented for the first time at the International Epilepsy Annual Congress

 

Bexicaserin, which has been granted Breakthrough Therapy designation by the FDA, demonstrated reductions in countable and total motor seizure frequency in the extension study comparable to reductions seen in the Phase 1b/2a PACIFIC trial, reinforcing durability of response and validating its progression to Phase 3 trials.

 

Additional data will be presented from the audiogenic seizure model and the GAERS absence epilepsy model, investigating sudden unexpected death in epilepsy (SUDEP), and seizure reduction respectively.

 

During the OLE, a median reduction of 59.3% in countable motor seizure frequency was observed, with 55% of participants experiencing reductions of ≥50% compared to the baseline before the PACIFIC trial.

 

This trial, EMERALD and other studies all at https://curesyngap1.org/resources/studies/

 

See and comment on Vicky’s recent post on her 7 year SYNGAP1-iversary:
https://www.linkedin.com/posts/victoria-arteaga-26913433_syngap1-familyjourney-resilience-activity-7366951726001606657-6pcM 

 

Join Citizen Health, we are at 275!  We should double that.

https://www.citizen.health/partners/srf

 

DSCIII Renewed to include SYNGAP1 alongside TSC, SHANK3 (aka PMD) and PTEN.  

 

CFC Starts on 9/1

https://curesyngap1.org/events/fundraisers/combined-federal-campaign-2025/

 

🔥🌡️ Syngapians don’t like the heat.

 

Conference is in 96 Days

https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/

 

Pubmed is at 39!
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&timeline=expanded&sort=date&sort_order=asc

 

SHARE BLOOD TO THE SRF BIOBANK AT CB!

https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/ 

 

VOLUNTEER 

Join us: https://curesyngap1.org/volunteer-with-srf/ 

 

SOCIAL MATTERS

- 4,299 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

- 1,420 YouTube.  https://www.youtube.com/@CureSYNGAP1   

- 11,298 Twitter https://twitter.com/cureSYNGAP1 

- 46k Insta https://www.instagram.com/curesyngap1/ 

 

NEWLY DIAGNOSED?

Next New Family Webinar - Tuesday Sept. 9th, 2025, 5 PM Pacific scheduled! https://curesyngap1.org/resources/webinars/webinar-105-syngap-research-fund-quarterly-webinar-new-syngap1-family-orientation/

 

Resources

https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families

 

Podcasts, give all of these a five star review!

https://cureSYNGAP1.org/SRFApple  

https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 

 

Episode 180 of #Syngap10 

#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS