SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
Genetic Therapy Companies (ignoring small molecules, see our pipeline here https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/)
Stoke Therapeutics #StokedAboutStoke
Presser: https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-landmark-new-data-support-potential
I did call this in #S10e111 https://youtu.be/i6EZUrqsn2g?si=RN3SLR2vHCjgAiGt&t=706
This study started in #S10e83 https://www.youtube.com/watch?v=7uK2dCs53Ew
Praxis Precision Medicines https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-provides-corporate-update-and-11
Longboard Pharma https://ir.longboardpharma.com/news-releases/news-release-details/longboard-pharmaceuticals-reports-full-year-2023-financial
Studies
https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/
CHOP: ENDD@chop.edu
Adults: https://drive.google.com/file/d/1tOdodcV7E5ROOHWyLn8a48x1WNBOr-U2/view
QOL: https://Syngap.Fund/QOL24
Fundraisers
247 supporters have us at $79k
Team Tavilla is over half of that at $47k
Big thanks to them and all teams especially those already over $1k, Phoebe, Kiera, Kaia & Gracyn.
Rifton bike for S4S anyone at $500+. 247 Supporters!
https://curesyngap1.org/events/featured/sprint4syngap-2024/
https://givebutter.com/ALjJXJ
Social Matters
953 Subscribers on YouTube. https://www.youtube.com/@CureSYNGAP1
Socials matters so we can find more people, like this: https://curesyngap1.org/blog/an-emotional-journey-begins-after-a-syngap1-diagnosis/
Podcasts, give all of these a five star review!
SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 137 of #Syngap10 - March 26, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
Webinars, Mugs, Blog, GCs, Ciitizen, Cure, OUAG, CTR
Connection is everything!
Great things afoot! Join us. - Episode 20 of #Syngap10 - July 23rd, 2021
Let’s @cureSYNGAP1 - Episode 19 of #Syngap10 - July 16th, 2021
”Seizures, Communication, Behavior, Sleep, Other” Is that right? - Episode 18 of #Syngap10 - July 9th, 2021
Let’s get to work for these 808 kids! - Episode 17 of #Syngap10 - July 2nd, 2021
Put your mask on first. - Episode 16 of #Syngap10 - June 25, 2021
Splash & #SYNGAPlove in 3 days, DSC & BCH Grants, more ICD attention! - Episode 15 of #Syngap10 - July 18th, 2021
Community and #SYNGAPlove - Episode 14 of #Syngap10 - June 11, 2021
Newsletter, SSB, Ciitizen growth, Frazier, Sprint, ICD-10 & you are not alone. - Episode 6 of #Syngap10 - April 16th, 2021
The things we do for LOVE! - Episode 13 of #Syngap10 - June 4th, 2021
IPSCs, Ciitizens, Sleep Webinar, NET Webinar, Birthday Party on FB! - Episode 12 of #Syngap10 - May 28th, 2021
We must be hopeful - and it makes sense to be so. - Episode 11 of #Syngap10 - May 21st, 2021
Scales, Grands, Ciitizens, Kayo, iPSC - Episode 10 of #Syngap10 - May 14th, 2021
Adults, New parents, ABA, Misense and Money - Episode 9 of #Syngap10 - May 7th, 2021
BREAKING NEWS 🚨re ICD-10 & other goodness around #SSB30 & #sprint4syngap - Episode 8 of #Syngap10 - April 30th, 2021
Sprint. BCH. Ciitizen. Meetings. Clicks. Docs. Wed. Volunteer! - Episode 7 of #Syngap10 - April 23rd, 2021
EEG Biomarkers, SSB Study, Ciitizen, CNF Survey, Sprint4Syngap - Episode 5 of #Syngap10 - April 9th, 2021
Ciitizen Study happening! #SyngapCensus = 762, Caren, Kyle & Sprint4Syngap - Episode 4 of #Syngap10 - April 2nd, 2021
Webinars, Warriors, Work, Caren subtitles & Sprint4Syngap - Episode 3 of #Syngap10 - March 29th, 2021
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