Ataxia Connection Travel Grants Bring Over 50 Attendees to the 2025 Annual Ataxia Conference

Submitted by Theresa Nelson, Executive Director at Ataxia Connection

It is an exciting opportunity for our organization, Ataxia Connection, to travel and attend the Annual Ataxia Conference (AAC) as a group and network with other individuals and care partners in the Ataxia community across the U.S., along with meeting the NAF staff. Our organization is dedicated to providing funds to have our support group members enjoy this type of experience. Ataxia Connection provides travel funds (conference registration, airfare and four-night hotel stay at the conference hotel) for a support group Ataxian and one companion/care partner to attend the conference and attend the sessions. We are excited that we can share it with our Ataxia community from Nebraska and Iowa.

Ataxia Connection has been providing this opportunity for the last several years. We started out with a handful of individuals traveling from 2016 to 2019, and in the last few years it has grown significantly. In 2023, about 20 individuals traveled, in 2024, we had 33 attendees and this year, we had over 50 individuals in our group that attended. It is exciting to see the numbers grow each year. Our group travels from Nebraska and Iowa, however with additional funding, we had 13 members of the Greater St Louis area also attend the conference this year.

Conference participants can recognize our group from our Ataxia Connection shirts. Those that travel with Ataxia Connection to the conference have wonderful experiences, here are a few comments:

I made friends and feel like I have developed a support network with people who truly understand my situation.
It was an experience that greatly exceeded our expectations. We were able to connect with fellow Ataxians and support individuals, locally and across the country.
My overall view of the conference was very good. I thought the topics for presentation were right on target. It was fun getting reacquainted with friends and getting to know new friends.

It was great! Got to see all of my friends, learn from the different speakers about how to manage my ataxia and see what new research is being discovered in ataxia.
This was one of the most impactful experiences I have attended. We are still in our first year of diagnosis, and the conference couldn’t have come at a better time. The speakers were uplifting and knowledgeable. The attendees were wonderful to meet. Perhaps the most surprising part of the conference was just being able to just be “us”. We weren’t a couple dealing with a disorder or a wife with a husband with “issues”. We were just us. We didn’t have to stop and explain ourselves. We didn’t have everyone staring at us. We didn’t have to do anything other than just enjoy the conference and learn more. It was so very, very freeing.

We had an amazing experience. We enjoyed meeting other people with ataxia. We especially appreciated meeting other parents going thru the same thing. We also loved being able to get to know the people in our group better. We are beyond thankful and blessed to have Ataxia Connection provide travel grants.
The conference itself was outstanding as always. There is always so much to learn, re-visit, and think about. It is a tremendous gift that Ataxia Connection supports us in traveling to conferences.

This was my 3rd Conference. I got to share this with my son this year, so this made my experience very special. I think the part I liked the most was the support everyone had for each other.
This was the first time in our lives that we have been around a larger number of people who either have, or are familiar with Ataxia. It was exciting to meet and learn from these individuals.
The AAC is one of the highlights of my year. No other place can I get the experience I get by attending. Making memories, learning from experts, inspiring others, and being inspired myself are all perks of this Conference. The 2025 Conference is my third, and in that time, the reasons for Conference attendance have changed for me. Initially, it was to learn more about Ataxia and to learn about the latest scientific discoveries that could mitigate the symptoms and root cause of my disease. There is still much to learn, but in subsequent years, the value comes more from my relationships with others in our group and across the nation. I see familiar faces from regular attendees and find solace knowing I have a conference of peers fighting the same battle I endure. It is truly the best opportunity to experience education, entertainment, and enjoyment firsthand with others who understand this disease. Without the travel grant, I honestly would not have gone.
We enjoyed the conference and looking forward to the next year. The speakers were excellent and knowledgeable about Ataxia. We met so many amazing people. We just want to say thank you.

Submitted by:

Theresa Nelson
Executive Director
Ataxia Connection (formerly known as Nebraska Ataxia)
theresa@ataxiaconnection.org
www.ataxiaconnection.org
402-979-6331(voice and text)
PO Box 24214 Omaha NE 68124

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