Episode 215

Go Ada & Ford. Fundraise now. #CTRPoll Do it now. Porter’s Sib Story. ORCA Study soon! #S10e214

Aug 10, 2026

9:57

Episode Description

Monday, August 10, 2026 - Week 33

Make sure to watch #S10e213 first! https://www.linkedin.com/posts/curesyngap1_camp4-trial-approved-in-australia-argentina-activity-7491598254027984896-wWTg

145 done! Out of 516 in US per last census: (https://www.linkedin.com/posts/curesyngap1_syngap1census-syngap1-census-activity-7478070129340215296-6Hjx)

CLINICAL TRIAL READINESS SURVEY - http://curesyngap1.org/CTRpoll

Do it now, let us figure out the state of our community.

CITIZEN Sign up now! https://www.citizen.health/ai-advocate/syngap1

Everyone with a sick kid needs this.

Different from CONNECT: https://curesyngap1.org/curesyngap1connect

Make sure we know how to reach you.

STUDIES ARE HAPPENING

- Albus, thank you to those families. Plug it in.
- Combi[o]mics - Thank you for doing this if invited.
- Everyone will get an invite to do an ORCA Validation Study, please do this. If you don’t get that email by end of August, bug us. We are only inviting those we can confirm have a mutation.

PERSONAL FUNDRAISERS
Fundraisers advance our mission & help you connect to community

#ForAda curesyngap1.org/forada is over $104k of $10k

#4Ford curesyngap1.org/4ford is over $20k of $20k

SIBLINGS - Go Porter!
cureSYNGAP1.org/Sibling

THINGS TO LOOK FORWARD TO…

5TH SCRAMBLE FOR SYNGAP, SC – 54 days till October 3rd

Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26

SHOOT FOR SYNGAP, UT – 96 days till November 14th

curesyngap1.org/calendar/shoot-for-syngap1

FIGHT FOR FELIPE, MA - 111 days till November 29th

curesyngap1.org/Fight26

CURE SYNGAP1 CONFERENCE - 115 days until December 3rd & 4th