Finding Connection at the 2025 Annual Ataxia Conference

Submitted by Mark Holdenried

Attending the 2025 Annual Ataxia Conference (AAC) in Las Vegas was a meaningful and energizing experience. From the travel experience to sessions, each moment added to the feeling that we truly are not alone in this journey.

Meaningful Moments and New Connections

Before even boarding the plane, I connected with fellow attendees from the NAF St. Louis group—setting the tone for a community-filled weekend.
We met a mother, her son (living with an unknown form of Ataxia), and his uncle at the Friday breakfast. It was just one of many heartfelt conversations during the event.
My wife found comfort and support in the “Birds of a Feather” session for spouses, and together, we also attended the session for SCA6—hearing others’ stories was incredibly impactful.

Highlights from the Conference

The Exhibit Hall was full of helpful vendors, and I appreciated learning more about treatment developments.
The Tai Chi and Rhythmic Rehabilitation sessions were not only useful but inspiring—practical ways to support our well-being.
We enjoyed a group photo and great conversations at the Meet & Greet with folks from the Ataxia Connection.
Arriving late to the Banquet led us to an unexpected seat near the NAF Board, sparking some memorable dialogue we won’t forget – Learned about “New Drug Applications” (NDA) submitted to the FDA.

Navigating with Accessibility in Mind

Traveling with Ataxia comes with challenges, and I’m grateful for the thoughtful accommodations:

Pre-boarding and access to the priority lane made the airport experience smoother.
I appreciated the wheelchair assistance at baggage claim, thanks to the kindness of fellow group members.
At the conference, using a scooter made it much easier to get around. The staff at the venue were incredibly helpful—ushers, waitstaff, and even a scooter-savvy restaurant manager made things more comfortable.

Words that Stayed With Me

Throughout the weekend, I heard many uplifting and motivating phrases from speakers and attendees alike:

“Focus on what you can do, not on what you can’t do anymore.”
“If you can conceive it, you can achieve it.” – Napoleon Hill
“Keep moving forward.”

These words reminded me of the strength and optimism that runs through our community.

A Few Suggestions

“Birds of a Feather” sessions were too short—many of us needed more time to share. I’d love to see these extended in the future.
The timing of our group photo conflicted with part of the SCA6 session, which we would have preferred to attend in full.
Hotel room key cards were sometimes frustrating—small improvements could make a big difference in accessibility.

Grateful for the Opportunity

We’re incredibly thankful to Theresa Nelson and the Ataxia Connection for helping facilitate our participation. If the opportunity comes again, we’d jump at the chance to attend another AAC. Please extend our heartfelt thanks to the donor who made this possible.

The conference truly felt like a massive support group, reinforcing the powerful message: You’re not alone. And together, we move closer to NAF’s vision of a world without Ataxia.

Tell Us About Your Experience

What was your favorite moment at AAC and why did it stand out to you?

With so many Ataxians, the phrase “you’re not alone” speaks volumes!

How has attending AAC impact your or influenced your understanding of Ataxia?

Learned even more, especially regarding recent developments!

Share your advice – What would you say to someone who is considering attending AAC, but they are scared?

It will change your life for the better!

How has NAF Helped You or Your Family?

I have a large family with at least 5 generations of Ataxians.

What is Your AAC Story?

We invite you to share your experiences from the Annual Ataxia Conference (AAC) with the community! Did you have a memorable moment or a story about connections you made at the conference? We want to hear about it! Did you capture a great photo? We want to see it!

Your experiences at the AAC are invaluable to us and can inspire others. Submit your story and photos to help us showcase the spirit of the largest gathering of the Ataxia community.

What is Your Ataxia Story?

Haven’t been to AAC? No problem! We’d love to hear about your personal journey! As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community.