Annual United Against Ataxia Hill Day was on September 20, 2023. At this virtual event, Ataxia advocates spoke with their Congressional Members to help them fully understand what Ataxia is and what legislative action is needed.
5th Annual United Against Ataxia Virtual Hill Day Was a Huge Success
Thank you to all of our amazing advocates! 164 advocates, from 33 states, educated lawmakers on Ataxia during 86 Congressional meetings. They urged action in funding research programs (CDMRP, NIH, & FDA) and legislation which would expedite treatments (Federal Aviation Act Reauthorization, the BENEFIT Act, & the RARE Act). The success of these meetings was a direct result of the time and commitment each of you took to prepare and deliver our important message.
Our individual and combined voices were heard! You helped to raise awareness about the journey of being diagnosed and living with Ataxia, and the search for treatments! It will be your story that your Member thinks of when reviewing future legislation and its impact on research. It is no longer theoretical, now it affects a constituent they know.
The primary ask, the continued inclusion of “Hereditary Ataxia” in the CDMRP/PRMRP, was well received. Appropriations requests were made last spring for FY24, and the Senate has already included the necessary language in their draft report. Offices overwhelmingly expressed support in passing this initiative. Furthermore, most encouraged us to reach out to them when FY25 appropriations requests open. That is huge! It is a clear example of how you are helping to grow ataxia champions on Capitol Hill.
2022 Hill Day Participant Quotes
Personal Experiences with Advocacy on Hill Day
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.
I didn’t know what to expect when Hill Day 2022 arrived. There were 4 of us to talk with federal government leaders representing Texas. Three of us had/have Ataxia, and one person is a full-time researcher of Cerebellar Ataxia. The congress people we talked with via Zoom, were all very nice and seemed to have a sincere interest in hearing what we were talking about and helping with funding. My understanding is that the awareness of Cerebellar Ataxia has greatly improved, but that awareness is not a large portion of our society as a whole.
Participating in Hill Day was easy and actually kind of fun! Lori and Andrew provided information in advance and conducted a planning call to help make us all feel comfortable participating. We read through the material to share, and each of us told a little bit about ourselves and how Ataxia impacted us in our own words. The legislators were thoughtful and interested in hearing our stories and asking how they could help.
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More Advocacy Events and Resources
Hill Day is just one of the many advocacy efforts that NAF is involved in. Check out our Advocacy page to learn more!
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