NHS in Colorado! Real talk about new therapies. Planning for RAA & the Conf! #S10e142
Full show notes: https://syngap.fund/n142
BIG NHS UPDATE
66 Kids evaluated, 11 have had follow-ups, ~20 new kids scheduled.
Colorado should start seeing patients in August!
WHERE TO DONATE
MONEY: MDBR is next week, donate now! https://charity.pledgeit.org/t/jY577u7uMc Thanks to the team. https://Syngap.Fund/Unite
BLOOD: June 7 & 8, Loews Coronado Bay Resort, email [email protected]
TIME TO JOIN #TEAMSRF
– Volunteer Webinar: https://syngap.fund/LT
– Fifty families lent their good names to SRF in this wonderful blog: https://syngap.fund/Community
– https://curesyngap1.org/volunteer-with-srf/
CHATS WITH INDUSTRY
– Is IT delivery a blocker for precision therapies, NO!
– 2026 is feeling like the earliest we see trials.
– BIO with Kathryn next week!
CALENDAR MANAGEMENT
Rare Across America is 66 days away, register now:
https://everylifefoundation.org/rare-advocates/rare-across-america/
Conference is 188 days away:
https://curesyngap1.org/events/conferences/syngap1-conference-2024/
PUBLICATION ALERT
https://x.com/cureSYNGAP1/status/1795837761678962799
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
SOCIAL MATTERS – AMPLIFY SRF TO MAKE SURE FAMILIES FIND US
– 1,020 YouTube. https://www.youtube.com/@CureSYNGAP1
– 10,000 Twitter https://twitter.com/cureSYNGAP1
– 3,591 LinkedIn. https://www.linkedin.com/company/curesyngap1/
– 49k Insta https://www.instagram.com/curesyngap1/
– 392 TikTok https://www.tiktok.com/@curesyngap1
Podcasts, give all of these a five star review!
SRF Channel – https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 142 of #Syngap10 – May 31, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
