Riding for RARE!!!!

Hi friends,

On May 3rd, I’ll be riding 40 miles through all five boroughs of New York City in the iconic TD Five Boro Bike Tour as part of Team CACNA1A. I participated for the first time last year, and it was a blast!

The CACNA1A Foundation has once again joined Bike NY as a charity partner to help raise awareness and critical funds for the CACNA1A Foundation, which supports individuals and families living with rare, life-altering neurological disorders caused by mutations in the CACNA1A gene.

You may know that my daughter, Emily, was diagnosed with a CACNA1A variant in 2020, after 18 years of wondering why she struggled with epilepsy, global developmental delays, speech and language issues, and a movement disorder. We finally had an answer, but quickly realized there were no specific treatment options. Today, six years after founding the CACNA1A Foundation, we are about to have our first clinical trial.

The CACNA1A Foundation is changing the trajectory for our families by:

• Funding research aimed at developing targeted treatments
• Providing trusted education and resources for families
• Connecting patients, clinicians, and researchers to accelerate progress

I’ve committed to raising $2,500, and I would be incredibly grateful for your support. No donation is too small — every gift helps move this research forward and brings hope to families who urgently need answers.

Thank you for supporting my ride and standing with the rare disease community.

With gratitude,
Lisa

40 miles. One rare cause. Endless impact.