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SynGAP10 weekly 10 minute updates on SYNGAP1  

SynGAP10 weekly 10 minute updates on SYNGAP1

Author: Syngap Research Fund, 501(c)(3)

Over 1,600 families are caring for a loved one with the rare disease SynGAP resulting from a variant of the SYNGAP1 gene. This weekly podcast is for them. -A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of CURE SYNGAP1. CURE SYNGAP1 is a parent-led public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://cureSYNGAP1.org
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#Future4Ford. 2Q26 #SYNGAP1Census = 1,806 Patients (+45) $CAMP #ValproateDemandBetter #S10e212
Episode 213
Sunday, 5 July, 2026

#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

 

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