United Against Ataxia Hill Day - Friedreich's Ataxia Research Alliance

Join us for the 7th United Against Ataxia Hill Day!

United Against Ataxia Hill Day 2025 will take place September 17, 2025.

This virtual event will take place between 9am–5pm ET on Wednesday, September 17, 2025. You will be scheduled for 2-4 meetings, and each meeting will take 15-30 minutes. No experience needed, training will be provided!

The power to create change starts with you! NAF and FARA join forces to raise awareness about Ataxia and advocate for legislative changes that directly impact our community. We need experts like you to share your stories and educate policymakers on Ataxia.

Registration is now closed.

2025 Legislative Asks

Continued inclusion of Hereditary Ataxia in the Congressionally Directed Medical Research Program (CDMRP)
Robust funding for the NIH, FDA, and CDMRP
Support Accelerating Kids’ Access to Care (H.R. 1509/S. 752)
Support Give Kids a Chance Act (H.R. 1262/S. 932)
Support for the Medical Research for Our Troops Act (H.R. 3906)

Training Video Playlist

Our United Against Ataxia Hill Day training videos break down each topic into short, easy-to-follow segments so you can feel confident and prepared for your meetings on Capitol Hill.

Watch the training videos

Dates

Registration for Hill Day 2025 is closed. Tune in for more opportunities to advocate!
August 25th – Deadline to Complete Advocate Training
Watch the training videos and complete a survey to indicate successful completion by August 25th. 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 ET.

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.