Longitudinal Data Matters! Prioritized list of studies! #Sprint4SynGAP a great success! #S10e206

Wednesday, May 6, 2026 - Week 19

 

Congrats to GETA, CURE SYNGAP1 Australia & CAMP4 for a great weekend. https://www.linkedin.com/posts/syngap1-epilepsy-ugcPost-7457791427486466048-j8SB

 

WEBINARS!

CURE-ID Webinar tomorrow! Register now. Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID 

 

Next week, especially NY families, while you are registering, please make sure to go to this one with Dr. Buxbaum from Mt. Sinai. curesyngap1.org/seaver https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-rarediseaseresearch-activity-7457507565527044096-dDEK

 

Longitudinal Data Matters - Every six months or more!

 

Study list!

• CURE SYNGAP1 CONNECT http://curesyngap1.org/connect

• Citizen Health https://www.citizen.health/ai-advocate/syngap1

• Combined Brain

• ProMMiS https://www.linkedin.com/feed/update/urn:li:activity:7450196488300728320 & Rare-X, the same week.

• OR DSC. #S10e

• CURE-ID for Drug responses. Webinar: Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID

 

6th ANNUAL SPRINT FOR SYNGAP1, we raised over $300k! (Gross)

Thank you Tavillas for raising over $170k this will go to the Missense fund. We spent over $¼M on missense last year.

 

Thank you Emily Barnes for hosting a New England event for families. https://www.linkedin.com/posts/ecarlisle_we-had-an-incredible-sprint-for-syngap-ugcPost-7457845816502845440-nJCd

 

Thank you to Sara and Sarah for the Virginia event. GREAT WORK. https://www.linkedin.com/posts/sarah-sakly-648544337_syngap1-raredisease-curesyngap1-ugcPost-7456869206341464065-VESz

 

Thank your Rifton for the donation of the tricycle. Congratulations Matthew! https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-sprint4syngap-activity-7457806850676281344--JR-

 

Thank you to the Edouard Family! cureSYNGAP1.org/Crafts26

https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-craftsforacure-activity-7457211260242411520-ekPz

 

INAUGURAL SF NIGHT OF IMPACT, CA – 22 days

Join us this is our only Gala for 2026!

cureSYNGAP1.org/SF26

 

5TH SCRAMBLE FOR SYNGAP,