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Advocating for Ataxia: My Virtual Experience on Hill Day

Author: Mark Hazlin, NAF Board Member

In 2021, as I logged into the virtual platform for the National Ataxia Foundation (NAF) Hill Day for the first time, I was nervous. As a PR person in Washington, DC, I’ve been to these advocacy events before. I have a good idea of how they typically go and what to expect. But, those previous events were for my job. This time, I was talking directly to my elected official about something I cared about personally. This time, it mattered to me more than ever, and the stakes were higher as a result. 

But, my professional experience also told me that constituents–like me, in this case–were the best people to talk to Congress about the problems of real Americans. 

A Personal Connection

No one can tell the story about Ataxia better than the people it affects. A first-hand account has an emotional impact on the listener that is hard to forget, and much more difficult to ignore. By sharing personal experiences, we bring attention to the challenges faced by individuals and families affected by Ataxia. This motivates legislators to take action. Each virtual conversation fosters understanding and empathy, paving the way for progress. It’s easy to be cynical about our government and elected officials. But, when you get right down to it, there are real people working in those offices on Capitol Hill who have families and friends they are working to help. 

The Power of Unity

Another major benefit of participating in virtual Hill Day was a reminder that I was not alone in this fight. Joined by fellow advocates who shared a common goal, we formed a strong and united front. Together, we amplified the urgency of finding effective treatments and ultimately a cure for Ataxia. In our unity, we found strength, support, and hope for a better future. We each shared our perspectives, and we echoed and applauded one another. The community we build is empowering.

Join the Cause

For all those who are passionate about making a difference, I encourage you to join the cause. The National Ataxia Foundation warmly welcomes advocates and provides the necessary support and resources on your virtual journey. Together, we can create a meaningful impact in the lives of those affected by Ataxia.

If Not Me, Then Who?

And, one last point that is a real motivator for me when it comes to Hill Day: If we do not do this, who will?

About the Author

Mark is a PR executive in Washington, DC. His mother and 7 other relatives are diagnosed with hereditary Ataxia, although the specific type is unknown. Mark joined NAF’s Board of Directors to help accelerate treatment development and improve clinical care. He is passionate about helping with NAF’s mission because it took 4 years for his own mother to receive a diagnosis. Mark said, “If we hope to find a cure, rare diseases like this need attention, funding, and support.”

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