COOL START TO THE DAY
[ Ссылка ] ► Grief in convo with Kali about Rare Disease Diagnosis.
NEWS
► We dropped the Zempleni Presser! How cool is this? Cool enough for the Exosome Industry News to write about it [ Ссылка ]
► Webinar: Milk exosomes to increase the expression of SYNGAP1 in SYNGAP1 mice March 3, 2022 @ 9am PT/12pm ET [ Ссылка ]
► More is coming soon. We have a few press releases in the hopper! One just made possible by a $70k donation from Unlock Defi [ Ссылка ] thank you so much. Learn more about that via this interview we did in November [ Ссылка ]
PRESENTATIONS
► Jess & Ray are presenting on SRF to the UK Community this weekend at Edinburgh, congratulations!
► Marta gave a presentation at one of our Pharma partners all-staff for Rare Disease Day. Thank you to her and congratulations. It is powerful to talk about our disease.
► The Data Sharing Panel was exceptional, if you missed it, watch the recording here:[ Ссылка ]
► Get your EEG Tracings! In EDF format. Just ask them at the lab, remember you have a right to your data in all Geographies.
AMAZING ASKS
► Profs at Oxford and McGill have reached out with exciting opportunities. Rarebase is getting noisy. I’m told to expect a proposal from WCM and we have one from Finland. We need more funding… start talking to families now. We are asking Leon and Overcome to co-fund with us too.
FUNDRAISING
► Suzanne in GA on Sparks of HopeJulie in NC on ScrambleNancy in NJ on GalaYOU where you are on Sprint eg. Tavilla
► 2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!
Sign up now: [ Ссылка ] Get a shirt: [ Ссылка ]
► This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here [ Ссылка ]
Apple podcasts: [ Ссылка ]
Episode 49 of #Syngap10 - February 25, 2022
#datasharing #biorasi #EEG #ciitizen #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
