National Ataxia Foundation Conference

Over spring break, we attended the National Ataxia Foundation Conference in Las Vegas—our first time participating in this incredible gathering of families, advocates, and researchers.

One of the most meaningful moments happened before the conference even began—through coordination efforts leading up to the event, two SCAR-15 families in the US met for the first time and spent a special afternoon together at the Planet Hollywood pool. Our kids connected, we shared stories, and suddenly this rare journey felt a little less isolating.

The next day, we attended the conference alongside our new friend and fellow SCAR-15 mom. Experiencing the event together made it all the more impactful.

While the ataxia community isn’t one we ever imagined being part of, we’ve found strength, understanding, and comfort among these resilient families—many of whom have faced long diagnostic journeys, health challenges, and a constant need to advocate.

We’re honored to be part of this community and grateful for the connections that continue to give us hope.