SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
- Correction: Last week, reminder, we are here to clear the path for whomever wins, we don't care who wins we want this race to be won and easier to finish for everyone.
- Big thought: Complex Population, about to get more complex, "Post-Intervention"
- Sign up for Ciitizen: https://www.ciitizen.com/syngap1/
- Remember that Duke presentation, here it is: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant/
- Next week, lets' get connected Global Genes Conference https://globalgenes.org/event/rare-patient-advocacy-summit/
- Simons Searchlight in Spanish, English is still being scheduled: https://syngap.fund/SimonsSearchlight/
- Interesting paper on #SYNGAP1 and Sleep, the best part is the suggestion at the end to use this for a clinical endpoint! https://twitter.com/cureSYNGAP1/status/1439825860245090306?s=20
- Not Alone Coloring Book! https://syngap.fund/notalone
- Cannonball 11 DAYS . 3 dads driving across the US https://syngap.fund/cball #UFDcure
- Go to the GALA! 29 DAYS! https://syngap.fund/gala
- Easy to do https://syngap.fund/GNP
- Donate to our current effort for Clinical Trial Readiness https://Syngap.Fund/CTR
- Sign up for this #podcast #SYNGAP10 here https://syngap.fund/10
- What is #SYNGAP1? https://www.syngapresearchfund.org/home/what-is-syngap1
This was Episode 28 of #Syngap10 - September 24th, 2021
#F78A1 #ICD10 #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
Thank Goodness we have a dynamic team! Some personal news. #S10e61
Major Preprint from Quadrato & Coba, Rumbaugh working with Praxis, Keep Fundraising! #S10e60
We raise funds, make mice & they make preprints! It’s working! #S10e59
Praxis Announces SynGAP Program & #Sprint4Syngap is a global success!. #S10e58
We need funding, companies and doctors. #S10e57
Why will companies work on #SYNGAP1? #S10e56
#Sprint4Syngap is just 3 weeks away! #S10e55
LOTS OF NEWS - 1055 Patients, it’s #SyngapCensus Day! #S10e54
Happy Epilepsy Awareness Day! #S10E53
We are starting to find lots of adult patients, what now?
Putting this work in perspective…
Another week in 5th gear, buckle up
Rare Disease Day is Monday! And here at SRF we can feel it all happening…
Happy National Caregiver Day!
It’s all coming together - data, trials, research. Time is now to join in!
You can’t do this alone, don’t try. But do Plan. Lots of planning from SNTs to Brain Donation to Service Dogs.
Old School Syngap10 - Lots of great content in 10 minutes. Fundraising. Blogs. Webinars. Patient stories. Ciitizen.
Special Double Episode: Understanding your particular variant and what to do about it (Hint: #iPSC)
Stoke Therapeutics & Acadia Pharmaceuticals are working on SYNGAP1 #S10e43
How to tell your family about SYNGAP1
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