Newsletter
Let’s catch the Genetic Therapy Tsunami for SYNGAP1!

SYNGAP10

Let’s catch the Genetic Therapy Tsunami for SYNGAP1!

Episode 40 of #Syngap10 - December 17, 2021   - Dennis’ tweet: https://twitter.com/LalDennis/status/1469502987173310466  - Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1 We are over 150!  - Clinical Trials link showing adult enrollment for…
December 18, 2021

Let’s catch the Genetic Therapy Tsunami for SYNGAP1!

Episode 40 of #Syngap10 – December 17, 2021  

– Dennis’ tweet: https://twitter.com/LalDennis/status/1469502987173310466 

– Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1 We are over 150! 

– Clinical Trials link showing adult enrollment for Angelmans. https://www.clinicaltrialsregister.eu/ctr-search/trial/2019-003787-48/NL

– ORCA Work, learn more about it: https://populationhealth.duke.edu/research/center-health-measurement/expanding-observer-reported-communication-ability-orca-measure  

– Learn about the Lighthouse: https://www.linkedin.com/posts/graglia_thelighthouse-activity-6877396385088471040-_ia_ & https://effieparks.com/podcast/episode-094-mike-and-nasha

– Add to the schedule June 11, 2022 — Million Dollar Bike Ride! https://www.milliondollarbikeride.org/

– Emmitt got a #VNS https://twitter.com/SydneyStel/status/1470766587795972096

– phenylbutyrate 

    –https://www.statnews.com/2021/06/03/parents-hoped-an-existing-drug-might-keep-their-kids-from-having-seizures-then-they-saw-the-price/

    –https://www.biorxiv.org/content/10.1101/2021.12.08.471799v1.full.pdf

    –https://www.clinicaltrials.gov/ct2/show/NCT04937062?cond=slc6a1&draw=2&rank=1

    -Start at 40:40 https://vimeo.com/610301620

– Raise some money! https://srf.salsalabs.org/srfdidyouknow

– What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

– Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 if you want a direct link for Apple: https://syngap.fund/10a 

#phenylbutyrate #MDBR #Syngap #Syngap1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

ADVERTISEMENT
ADVERTISEMENT

You may also like

We gratefully acknowledge the many organizations that have generously supported our podcasts and platform.

Silver Sponsors

Bronze Sponsors

Event and Media Partners

Buffer LinkedIn WhatsApp