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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
Friday Oct 22, 2021
Friday Oct 22, 2021
Happenings
Tomorrow is the GALA https://syngap.fund/gala
In two Thursdays! Investigating the functional single cell biology of SYNGAP1 pathways Thursday, November 4th Register: http://Syngap.Fund/mc
NOW (Crypto Art Auction) https://syngap.fund/sungap
ICDs & Medical Care
- Corey ICD-10 issue https://syngap.fund/F78A1
- ICD-11 is happening too! Not kidding: https://www.syngapresearchfund.org/post/icd-11-is-coming-soon-and-we-need-your-help
- Medical Considerations Guide is up! www.syngapresearchfund.org/families/doctors
Thank yous
- Thank you to Ashley and Forbes for giving SRF some air time!
- Thank you to Ira for the opportunity, longer interview today on Potential, Progress, Possibilities, on https://syngap.fund/mike or directly at https://youtu.be/RGnStUPmUkI
- Spectrum for featuring two SRF Grantees work. https://www.spectrumnews.org/news/autism-linked-gene-syngap1-molds-synaptic-plasticity-learning/
- Thank you to Jansen’s parents for going big on this fundraiser:
https://syngap.fund/Jansen $90k+
Data Deadlines
- Sign up for #Ciitizen, we have until November 15 to be in the next release: https://www.ciitizen.com/syngap1
- December 3rd is the third annual SYNAPSE Roundtable #SynapseRT https://www.Syngap.fund/RT3
etc.
- What is SYNGAP1? https://www.syngapresearchfund.org/home/what-is-syngap1
- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10
#F78A1 #ICD10 #ICD11 #Syngap1 #SYNGAP #SUNGAP #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
Episode 32.
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