Please join us for the Annual United Against Ataxia Hill Day on September 20, 2023. This will be a virtual event. Ataxia advocates will speak to their Congressional Members. 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. The power to create change starts with you! Sign up to be a part of Hill Day below.
Feel free to post on social media to support these efforts using #AtaxiaHillDay.
Register to be an Ataxia Advocate on Hill Day
Virtual Event
We need all the help we can get! Sign up today to make a difference.
Registration requires two steps:
- Sign up to participate in Hill Day – Register Now
- Look out for an email with the required one-hour training video recording. Watch the training video and complete the video survey by August 28th.
- Attend an optional Hill Day Q&A session on August 28th at either Noon ET or 7pm ET. These sessions will be an open Q&A format to answer all your questions that were not addressed in the training video.
Important! Your Congressional meetings will not be scheduled until you complete the training video survey.
If you cannot attend the training, or if you have other questions, contact Lori Shogren at lori@ataxia.org or Brigid Brennan at brigid.brennan@curefa.org.
Resources
- Policy Primers/One-Pagers Coming Soon!
- Mock Congressional Meeting
- Tips for Sharing Your Story
- Federal Appropriations Process
2022 Hill Day Participant Quotes
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.
Personal Experiences with Advocacy on Hill Day
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.
Join the NAF Advocacy Mailing List
Would you like to receive advocacy news as it happens? Join our advocacy mailing list! Complete your membership information and select “Advocacy” as one of your interests!
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!
Read Other Advocacy News
Community Response Regarding Troriluzole Delivered to FDA
Last month we asked for your feedback about the FDA’s decision to refuse to file Biohaven’s NDA for troriluzole. More than 3,000 people stepped up to make their voices heard! Read More…
Tell Us Why You Think Ataxia Deserves Regulatory Flexibility
Thank you for submitting your comments for the FDA! NAF gathered feedback from the Ataxia community to submit to the FDA. We’re concerned with the FDA’s decision to refuse to Read More…
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. Read More…
Read Our Latest Blogs
Community Response Regarding Troriluzole Delivered to FDA
NAF Team Member Joins Climbing Kili for a Cure
Unraveling Ancestry: Mary Hogan’s Journey
Tell Us Why You Think Ataxia Deserves Regulatory Flexibility
NAF Calls on the FDA to Apply Regulatory Flexibility and Accept the NDA Filing for troriluzole
Advocating for Ataxia: My Virtual Experience on Hill Day
