Health Podcast Library
Episode 213

#Future4Ford. 2Q26 #SYNGAP1Census = 1,806 Patients (+45) $CAMP #ValproateDemandBetter #S10e212

Jul 5, 2026
9:52

Episode Description

#Future4Ford. 2Q26 #SYNGAP1Census = 1,806 Patients (+45) $CAMP #ValproateDemandBetter #S10e212

Saturday, July 4, 2026 - Week 27

 

#Future4Ford! Already at $3,500+!  Share.  Thank you to the Family.

This is the model for newly diagnosed, call us, set up a page, help us help your loved one. cureSYNGAP1.org/4Ford 

 

CENSUS - 1,806 https://curesyngap1.org/blog/syngap1-census-2026-update-45-q2-total-1806/

Per https://docs.google.com/spreadsheets/d/1oJwMysR2wyTxe91zLlKJglNa0NySPxkBF0PRiV6mBmM/edit?usp=sharing, no change in Germany, UK, or Netherlands.  This is clearly wrong.

 

MERCH - 9 days left!

New t-shirts!  Buy for everyone! There are some funny ones this year and the classics. cureSYNGAP1.org/Bonfire

 

CAMP4 has been busy!

Meeting with one of our families: https://www.linkedin.com/posts/syngap1-share-7473374060614201345-SeKO/

Shoutout on NASDAQ: https://www.linkedin.com/posts/camp4-therapeutics_syngap1awareness-regrna-syngap1-activity-7474823632972820480-UMqi 

$CAMP closed at $4.43 yesterday. https://www.google.com/finance/beta/quote/CAMP:NASDAQ

 

BONES – This is not medical advice, I am not a doctor.  Talk to a doctor AND know your facts.

https://curesyngap1.org/blog/navigating-a-lifetime-of-diagnoses-michaels-syngap1-journey-and-the-effects-of-anti-seizure-medications-on-bone-density/

 

Valproate is the active Ion, it comes from Valproic Acid (Depakene), Sodium Valproate or  Divalproex Sodium (Depakote).  They all cause bone loss by stoping stomach from absorbing, then robbing bones, then flushing out.  More and longer is worse.  Vitamin D and Calcium can help but they need to start early and it’s better to just find another drug.  Also insurance likes it because it’s cheap and old – demand better.

 

“Valproic acid and clobazam were commonly used for epilepsy treatment, while risperidone, aripiprazole, and guanfacine were commonly used for behavior management. Valproate and lamotrigine were more effective at reducing seizure frequencies or maintaining seizure freedom than other anti-seizure medications.”  Clinical signatures of SYNGAP1-related disorders through data integration https://pmc.ncbi.nlm.nih.gov/articles/PMC12419475/

 

THINGS TO LOOK FORWARD TO…

5TH SCRAMBLE FOR SYNGAP, SC – 91 days till October 3rd

Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26

 

SHOOT FOR SYNGAP, UT – 133 days till November 14th

curesyngap1.org/calendar/shoot-for-syngap1/ 

 

FIGHT FOR FELIPE, MA - 148 days till November 29th

curesyngap1.org/Fight26 

 

CURE SYNGAP1 CONFERENCE - 152 days until December 3rd & 4th

cureSYNGAP1.org/Denver rooms available: ‭cureSYNGAP1.org/denhyatt for $159.  In on Wed, out on Saturday.

 

PUBMED

Pubmed 2026 is at 40. +13 vs the week. (61 last year was +9) We are already at the 4th highest year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

 

Thanks to Dr. Stephen Smith for this exciting paper, especially in the context of ASOs…
Genetic rescue of disrupted synaptic protein interaction network dynamics following SYNGAP1 reactivation https://pubmed.ncbi.nlm.nih.gov/42362191/  

 

USA 🇺🇲: Use your ICD-10, F78.A1

 

SOCIAL MATTERS

5,106 LinkedIn.  https://www.linkedin.com/company/curesyngap1

1.59k YouTube.  https://www.youtube.com/@CureSYNGAP1

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

43.7k Insta https://www.instagram.com/curesyngap1

 

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

Episode 212 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy