Join NAF and our partners at FARA in advocating for Ataxia and rare disease related policies during our annual United Against Ataxia Hill Day on September 25th! Advocates will have the opportunity to attend virtual meeting with members of congress and their staffers to tell their stories and relay the importance of supporting NAF’s legislative initiatives.
2024 Legislative Asks:
- Continued inclusion of Hereditary Ataxias in the CDMRP
- Support for the BENEFIT ACT
- Support for the Creating Hope Reauthorization Act
- NIH and FDA Appropriations
- Accelerating Kids Act
- Rare Act – One Pager
Registration and More Details
- Sign up to participate in Hill Day- Registration opens July 22nd.
- Watch the training videos and complete a survey to indicate successful completion by September 3rd. Links to the training videos and survey will be sent to you when you register.
Important! Your Congressional meetings will not be scheduled until you complete the training video survey.
If you encounter any problems, or if you have any questions, contact Lori Shogren at lori@ataxia.org or Emma Potter at emma.potter@curefa.org.
All meetings will be virtual and run approximately 15-30 minutes in duration. You will be assigned 2-5 meetings between 9am and 5pm.
Your Congressional Members need to hear from you to fully understand what Ataxia is and what legislative action is needed! Join us in raising awareness about Ataxia, research funding needed, and ways to expedite treatments.
Advocacy Resources
Congressional Appropriations Tip Sheet
Accelerating Kids Act One-Pager
*More information on each of these initiatives is available on our advocacy webpage and training videos on each topic will be sent to you when you register for Hill Day.
Personal Experiences with Advocacy on Hill Day
This was my first time…it turned out to be a positive experience.
I was very impressed how receptive the lawmakers were to all that we asking from them to support us.
This was an awesome experience. I'm not usually a leader but I welcomed the role.
Mark Hazlin
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.
Greg Gary
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.
Bridget George
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.
Stay Connected with NAF
Advocacy News
National Ataxia Foundation Hosts Congressional Briefing with Bill Nye, The Science Guy, to Raise Awareness of Ataxia and the Impact on Patients and their Families
Session focused on the importance of funding research and approving new treatments for rare diseases, especially those with no FDA-approved treatment options like Spinocerebellar Ataxia (SCA) Minneapolis, MN (November 19, Read More…
Congressional Resolution Passes to Designate September 25 as “National Ataxia Awareness Day”
This designation is important to raising awareness of ataxia, ataxia research, and the search for a cure. Minneapolis, MN (September 20, 2024) – The National Ataxia Foundation (NAF) and the Read More…
2024 United Against Ataxia Hill Day
Join NAF and our partners at FARA in advocating for Ataxia and rare disease related policies during our annual United Against Ataxia Hill Day on September 25th! Advocates will have Read More…
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