NHS in Colorado! Real talk about new therapies. Planning for RAA & the Conf! #S10e142

EPISODE · May 31, 2024 · 15 MIN

NHS in Colorado! Real talk about new therapies. Planning for RAA & the Conf! #S10e142

from CURE SYNGAP1 PODCAST aka SYNGAP10

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

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NHS in Colorado! Real talk about new therapies. Planning for RAA & the Conf! #S10e142

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