SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
CANNONBALL!
Donate now, it’s matched: https://www.justgiving.com/fundraising/ufd-cftc-2022
Brett talking about CB2 https://www.youtube.com/watch?v=2Wb0RO74UIo
UPenn interview https://www.youtube.com/watch?v=gFLEj_Uq1k8
Twitch: https://www.twitch.tv/ufdisciple
Brett: https://twitter.com/UFDTech
Peter: https://twitter.com/phalliburton
Kevin: https://fryereeves.com/kevin-w-frye/
VISITS
Pavel: https://twitter.com/SydneyStel/status/1584233335554854915/photo/2
Sydney: https://twitter.com/SydneyStel/status/1583079166014263296?s=20&t=YGu_OlFePZ5_jEhZvMj97g
Rebecca: https://twitter.com/SydneyStel/status/1584233335554854915/photo/3
Virginie: https://twitter.com/McNamarVirginie/status/1583871153231183872?s=20&t=YGu_OlFePZ5_jEhZvMj97g
Lauren: https://twitter.com/UFDTech/status/1584003603463045120?s=20&t=YGu_OlFePZ5_jEhZvMj97g
RAREBASE
https://www.rarebase.org/
AMAZING PRESS
TV - CBS - NY
https://www.cbsnews.com/newyork/news/dads-take-dares-for-donations-on-cross-country-road-trip-raising-money-for-syngap1-research/
FORBES https://www.forbes.com/sites/billroberson/2022/10/21/electric-cannonball-run-dads-drive-a-tesla-model-y-cross-country-to-fight-a-disease-affecting-their-sons/
FOX
https://www.foxnews.com/us/dads-drive-across-country-expand-awareness-kids-rare-disease
TONY
https://threadreaderapp.com/thread/1582766217810493441.html
UPCOMING EVENTS
NOVEMBER IS GIVING SEASON!
3 Weeks:
- November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap
- November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient
6 Weeks:
December 1&2 in TN - SYNGAP1 CONFERENCE 2022: Charting our rare disease treatment path https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://syngap.fund/10a
Episode 79 of Syngap10 - October 23, 2022
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
BONKERS week. #S10e62
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
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