Collaboration. Transparency. Urgency.

CURE SYNGAP1 is a global group of families committed to accelerating the science to cure SYNGAP1 & to supporting each other.

Learn more about SYNGAP1

Newly Diagnosed? Click here!
See the 2025 CURE SYNGAP1 Impact Report at cureSYNGAP1.org/Impact25
Pre-register for future updates on the CURE SYNGAP1 Conference 2026 in Denver – cureSYNGAP1.org/Pre26

Upcoming Events & Webinars

Featured Event

CURE SYNGAP1 Conference 2026 in Denver

December 3rd, 2026 - December 4th, 2026

Scramble for Syngap – 2026

October 3rd, 2026

Fight For Felipe 2026

November 28th, 2026 - November 29th, 2026

Sprint For Syngap 2027

April 24th, 2027

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Latest News & Updates

June 21, 2026

Team CURE SYNGAP1 Rides Again – U Penn’s Million Dollar Bike Ride (MDBR) | June 13, 2026

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June 11, 2026

Phoebe’s Fight – How SYNGAP1 Affects the Life of a Child

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June 3, 2026

Dr. Helen Willsey and Dr. David Kastner to Investigate SYNGAP1’s Role in Cilia Function and Behavior with support from CURE SYNGAP1 – PR50

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May 31, 2026

Funding for “Validating Remote Developmental Assessments in SYNGAP1-Related Disorders” grant awarded to co-PIs Julie Orlando DPT, PhD of Center for Epilepsy and Neurodevelopmental Disorders at U Penn and Dr. Jill McKee of Children’s Hospital of Philadelphia (CHOP) from CURE SYNGAP1 – PR49

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May 31, 2026

Global SYNGAP1 Organizations Form CURE SYNGAP1 COLLECTIVE (CSC) to Accelerate Treatments and Ensure Patient Access through Coordinated Global Action – PR48

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May 25, 2026

When Inclusion Fails

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Our Warriors

Phoenix

Kenna

Daisy

Sienna

Jack

Sloane

Lorelei

Jackson

Theo

Emma (Emmita)

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Newly Diagnosed?

Join our registry

Register with Citizen Health to collect as much de-identified group data for researchers to use. We need as many to register to improve the chances for successful clinical trials.

Get involved

The best way to help someone with SYNGAP1 is to help spread awareness and stay informed. Start by connecting with CURE SYNGAP1, holding a fundraiser, and becoming a volunteer.

Connect

New families

If you're newly diagnosed or looking for the SYNGAP1 community, we have developed a Resource Guide with basic information as well as important tools for you and your doctor.

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