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
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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