#ILoveSomeoneWithSYNGAP1. June 21 is SYNGAP1 Awareness day. $159 rooms at the GrandHyatt! #S10e210

Friday, June 19, 2026 - Week 25

 

June 21 is SYNGAP1 Awareness Day, but we have made it SYNGAP1 Awareness month! Why 6/21? Because 6p21.32 Donate! cureSYNGAP1.org/Donate 

 

#ThisIsOursToLose & #BurdenHopeProgress watch #S10e208 https://curesyngap1.org/podcasts/syngap10/tony-update-thisisourstolose-more-great-results-from-camp4-nightofimpact-in-9-days-s10e208/ 

 

New family email, very good, lots of questions. It’s all here. Reach out, we are here for you and you are welcome in this community – you are part of it whether you like it or not.

• Raise money. Join our host committee for 2nd SF event next year.
• Believe that we are doing the best we possibly can, and you would be adrift without a PAG. If you think this is painful, imagine if we weren't here!
• Register for the Conference. Book tickets to DEN now. cureSYNGAP1.org/Denver
• Join us -- make this org better for all of us and all our kids for all their lives.

 

Complex work doesn't fit neatly in 10 minutes anymore... Health Economics and Market Access work is going well, we will put out an RFP shortly.

 

NATURAL HISTORY Goes On! Make sure you are in it. https://curesyngap1.org/resources/studies/syngap1-prommis/

Orlando/McKee Grant "Validating Remote Developmental Assessments in SYNGAP1-Related Disorders" cureSYNGAP1.org/PR49

 

🤖 ARI Sign up now, s/he keeps getting better, and then connect to Citizen Health, if you are not on Citizen Health, fix that.

1. https://www.citizen.health/ai-advocate/syngap1
2. https://ari.citizenhealth.com/

 

KUDOS

- The fifth MDBR, Justin Albrecht rode 70 remote in NC. Raised $2k.

- Rachel Jasiczek (Yah-she-check) was a guest on Remarkable Futures Podcast - https://open.spotify.com/episode/7dYmHcXEu58H4C8VCoZ9V1?si=x3xvui86TY2cyGHyS3mGDQ

 - Collective: CURE SYNGAP1 Collective - cureSYNGAP1.org/PR48 Collective page - cureSYNGAP1.org/Collective 

 

More fundraisers! WARD - Shoot for SYNGAP on November 14th in Utah! https://fb.watch/HRnwf9FnEB/

 Another in Boston in the works…

WEBINAR: Understanding ASOs & Informed Consent

June 30 4:30 ET https://curesyngap1.org/calendar/understanding-asos-informed-consent/

 

5TH SCRAMBLE FOR SYNGAP, SC – 106 days till October 3rd

Classic case of a small event becoming an institution!

cureSYNGAP1.org/Scramble26

 

CURE SYNGAP1 CONFERENCE - 166 days until December 3rd

cureSYNGAP1.org/Denver rooms available: ‭cureSYNGAP1.org/denhyatt for $159. In on Wed, out on Saturday.

 

USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142

 

PUBMED

Pubmed 2026 is at 37. +12 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

 

SOCIAL MATTERS

5,058 LinkedIn.