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