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Navigating the Annual Ataxia Conference and Finding Friends Along the Way

Author: Dana Mauro, NAF Support Group Leader

Hi, let’s talk about Ataxia. When my husband, John, was diagnosed with Ataxia, we were desperate for information. We scoured the internet looking for anything on Ataxia, but all too often what we found was inaccurate and just caused us more worry. We wanted to understand what it meant for us and our family. We had 2 young boys at the time. We wanted to understand the prognosis and how to plan for the future, but in the end we were overwhelmed and anxious because there were just so many unanswered questions. 

Our First Experience at AAC

Shortly after John’s diagnosis, we discovered the Annual Ataxia Conference (AAC) hosted by NAF and we were so glad that we did! It was life-changing. We met so many people that have become our closest friends. People that we connected with instantly because they knew what we were going through. We didn’t have to explain ourselves because they got it! The other attendees were going through the same exact thing. These people have become our strength and our support when times get tough. 

The only thing missing for us was a session on how to navigate and make the most out of the conference. It can be a very overwhelming first experience. We needed a guide. Someone to give us a high level view of what to expect, how to plan our time and guide us towards sessions and experiences that would benefit us most. 

Last year was our 10th year going to the conference. I wanted to give back and help anyone attending the conference for the first time. And that is how the First-Timer session came to be. This year I’m hosting another First-Timer session at the 2020 Annual Ataxia Conference in Denver, CO with Ataxia expert Dr. Susan Perlman on Thursday, March 5 at 3pm. Please join me and register for the conference today!

What to Expect at AAC

Let me tell you a little more about what’s so great about this conference………….People from all over the world come to this conference to connect. There are doctors and top researchers in the field of Ataxia that give informational and educational sessions. And these professionals are your number one resource for accurate and current Ataxia information.

There are breakout groups that are called Birds of a Feather sessions. They are organized by types of Ataxia. They also have Birds of a Feather groups for a spouse, a sibling or for a parent of someone with Ataxia. What’s great about these groups is that everyone in the group is experiencing similar things. You form an instant bond with these individuals and most of them you’ve never met before in your life. You leave these meetings really feeling that connection because this person is experiencing the same thing that you are. You help each other out, you share tips and tricks, you’re a shoulder to cry on and you’re an ear to listen. It’s an invaluable experience. 

At the end of the weekend there’s a banquet. You get to dress up, let your hair down, have a nice dinner, network with the friends you’ve made throughout the weekend, meet the doctors and some of the leading researchers who are trying to find a cure for Ataxia. It truly is a great experience!

Tips for First Time Attendees

If you’ll be joining me for the first time at the Annual Ataxia Conference, check out a few tips that I shared on my Ataxia Did You Know? podcast

For more information about the 2020 Ataxia Conference and to register visit

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