SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
#S10e96 - https://www.youtube.com/watch?v=MkCKK4Z7J2I
Rochester - Check. I asked in #S10e132 to do this and you stepped up, thank you. We hit 200!
Aparito time Fill this in: https://forms.gle/4EsW3wu8BG4TQrD7A
The intersection of biomarkers and repurposing: The latter could help us figure out which of the former to focus on which could be the difference between a drug making it.
Repurposing:
Friend message - “And I wanted to tell you about the worsening behavior with treatments: a friend of mine has a son with Dravet syndrome, and many years ago they started him on a drug that reduced the seizures quite a bit, and my friend used to say “with this new treatment cleaning his brain from all those EEG interferences, we are starting to see more of his personality… and we’ve realized that we don’t like him”. Very harsh but very real to say”
Morning Video SM vs ASO vs AAV https://www.youtube.com/watch?v=-xp3kTsBz38
List of repurposed drugs:
Fycompa ® story from middle market country, Fycompa + Depakine + Risperadone. Wow.
Ethics. Is it ethical to sit back and let our kids suffer?
Thank you to Virginie who is helping with EEG grant and volunteers, we have her back from ciitizen! Thank you to those working on CZI grant too!
Congratulations to Encarnation and the SYNGAP1 European Team for this coverage https://english.elpais.com/health/2024-02-12/unraveling-the-mystery-of-celias-inexplicable-disease.html
Ed said:
Upcoming
Fundraising
Podcasts, give all of these a five star review!
SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 134 of #Syngap10 - Feb 24, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Soiree: Incredible, Boston: Fabulous; & two to-dos before SYNGP-A-PALOOZA ‘22, NASHVILLE #S10e82
SYNGAP-A-PALOOZA ‘22, NASHVILLE & a bit more on ASOs #S10e81
ASOs in the news, let’s discuss in Nashville! #S10e80
#UFDcure CANNONBALL2 is a wrap/half done. #S10e79
Event recaps with special guest hosts #S10e78
SYNGAP1 News: Boston Trip Report, Precision Neuroscience Summit and Relentless Progress. #S10e77
Every Patient Matters. Global Edition: SRF touching Ukraine/Poland 🇺🇦🇵🇱, Greece 🇬🇷, Colombia/LatAmerica 🇨🇴, Netherlands 🇳🇱 & UK 🇬🇧… #S10e76
We 💜Events, Drugs 💊 Rarebase & NOSpharma, Data 👩🏾💻 Simons & Invitae #S10e75
Praxis + Ciitizen = PROGRESS #S10e74
Leon #S10e73
A day in the life of SRF: Greece, Ukraine, Rarebase, Zempleni #S10e72
THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71
YOU CAN HELP PRAXIS TO PREPARE FOR CLINICAL TRIAL READINESS FOR SYNGAP1 IN PARTNERSHIP WITH CIITIZEN & SRF
Why the Bowie grant is so exciting! Our second collaborative grant! #s10e69
This week was ripe with a promising future! #s10e68
Take time to grieve & then come back to this community to grow. #s10e67
Missense Variants are Finally Getting Attention. Reclassification. Grants. #S10e66
We are learning from the best - A read out from #DSFinDFW Conference. #S10e65
Throw the doors open, build your team, tell everyone. #S10e64
Are you coming to our conference in December? Some goodies to share with your favorite #RareDad - #S10e63
Create your
podcast in
minutes
It is Free
The emPOWERed Half Hour
Social Dallas Podcast
Change Church Podcast
Delivering Solidarity
Six Degrees with Kevin Bacon
Nonprofits Are Messy: Lessons in Leadership | Fundraising | Board Development | Communications