Crafts for a Cure: CURE SYNGAP1, in Honor of Naya

Although this campaign has ended, you can still help CURE SYNGAP1 at cureSYNGAP1.org/Donate!

Join hosts Alexis & James Edouard on February 1 at Forward/Slash Distillery in Winter Park, FL for Crafted for a Cure! There will be Food Trucks, Spirits, DJ Ionman, Community, and Fun, all to raise funds for research in honor of their daughter Naya. Naya, was diagnosed with SYNGAP1-Related Disorders, an ultra-rare and devastating Developmental and Epileptic Encephalopathy (DEE).

SYNGAP1 causes constant epileptic activity in the brain, which worsens developmental outcomes over time. While there is currently no cure, there is hope. Despite her challenges, Naya is a kind, joyful soul. She loves the beach, singing, dancing, and playing with her dog, Puka. She brings laughter and light to everyone who knows her.

“Our family has long been committed to diversity, equity, and inclusion. Today, that commitment includes advocating for individuals with rare genetic conditions. Many people remain undiagnosed with SYNGAP1 due to the cost and limited accessibility of genetic testing. Earlier diagnosis matters — and access saves time, outcomes, and lives.

“While there is no approved treatment for SYNGAP1 yet, thanks to CURE SYNGAP1, promising therapies are being developed and are expected to enter clinical trials within the next year. For children like Naya, time is brain.”