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
McKee Data Webinar on Thursday! #SPRINT4SYNGAP in 4 days! The Emergency Plan, DSF Caregiver Connect, PGx, Cool Paper, Biorepository Collection! #S10e102 #DNAday
SRF Supported Publication on NET, Siblings, Webinars, Frog Video, Clinical Trial Questions… #S10e101
💯Episode 100! Survey, GI, Biorepository, Press, PG, ASO Training, Sprint3 in 3 weeks!!! #S10e100
🌞🐒🐸SYNGAP1 is HOT: Gene Therapies, Monkey, COMBINEDBrain, Biorepository, Frazier, Frogs, 1,251 patients & studies #S10e99
Building the SYNGAP1 SRF House - using the Milken Fastercures Research Partnership Maturity Model - #S10e98
Talking to families with 2 year olds, 3 Webinars not to miss, and Sprint4Syngap, Stoke & Praxis Updates, GG Next 2023 Report - #S10e97
Rare Disease Day 2023 was epic and you should have been there. Sprint and Webinar update. #S10e96
Rare Disease Day 2023 - Hattie Video, Coller & McKee Webinars, Missense SYNGAP1 iPSC, $20k, Apply for a Grant, Sprint4Syngap, Join us. #S10e95
Time to fundraise for SYNGAP1 Research! Great info on Webinars, Blog, PRAX-222 & SynGAP Stories… #S10e94
More on ENDD gift at Penn, but first, Finding SYNGAP1 Patients, Hotels & Grief in Florida - #S10e93
10 Reasons SYNGAP-land is hopeful & exciting today #S10e92
Why we need to keep talking about SYNGAP1 #S10e91
Seven Ways to advance SYNGAP1 Research this week. Post video, take survey, tell us your opinion on Rare-X/Simons, Update Ciitizen, #SRFWW, JR’s book, Plan. #S10e90
JR’s book, ORCA & RareX, Data talks, Update Ciitizen, Syndrome Management, ASOs for the Brain, Libby & Espy #S10e89
New Grant, Rare Affair, SYNGAP1 research and events #S10e88
SRF 2022 Numbers, Great Press, a wonderful wedding. #S10e87
#SYNGAPconf22 was a hit, join us in 2023… #S10e86
#AES2022 clearly showed us that SRF & SYNGAP1 have arrived… #S10e85
#ImpatientOptimism is the appropriate feeling for this moment… #S10e84
#StokeTx just showed us the future & will open the SYNGAP1 meeting #S10e83
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