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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute 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 the SynGAP Research Fund. SRF is a parent-led, all volunteer 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://www.syngapresearchfund.org/
Episodes
Tuesday Dec 12, 2023
Tuesday Dec 12, 2023
Today a SYNGAP1 patient was dosed with 4PB. Thank you Dr. Grinspan!
Have you seen our new site? Thx Ed, Dan and team! www.cureSYNGAP1.org
Finances, we have two years of audited financials on https://curesyngap1.org/finances/
There are two reviews of the SYNGAP1 Conference and one of AES you need to read
S1 https://curesyngap1.org/blog/syngap1-conference-2023-science-day-a-summary/
S1 https://www.draccon.com/dracaena-report/syngap2023
AES https://www.draccon.com/dracaena-report/aes2023
End of year Giving is afoot!
Give up your cup https://givebutter.com/Iuwfzd
Albrecht Match https://givebutter.com/uNxleH aka Syngap.Fund/Harper
General Giving https://curesyngap1.org/donate/
Sign up for Adult Study led by Dr. Andrade, if you loved one is 17 or over please email Ilakkiah.Chandran@uhn.ca
Sign up for NET Study, email KHuba@jcu.edu check out #S10e122 and the #SRFFrazier Release if you are not up to date!
https://www.eurekalert.org/news-releases/1006753
Give all three of our podcasts 5 stars everywhere.
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
This is a podcast subscribe!
https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1/id1560389818
Episode 126 of #Syngap10 - December 12, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
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