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2021 United Against Ataxia Hill Day

2021 United Against Ataxia Hill Day

NAF, FARA, and more than 100 volunteer advocates will come together to raise awareness about Ataxia and supporting legislation that directly impacts our community.

The third United Against Ataxia Hill Day will be held on Wednesday, September 29, 2021. Ataxia advocates will speak to their Congressional Members to make the four asks listed below. Feel free to post on social media to support these efforts using #AtaxiaHillDay.

Join Us for the 1st Hill Day Celebration
After a day of advocacy work, please join us as we recognize the inaugural Ataxia Research Champions!

September 29th at 7pm EDT

This program will be virtual. The broadcast will premiere at www.ataxia.org/HillDayCelebration. The link will be updated to bring you to the broadcast on the day of the event.

2021 Hill Day Asks
A group of advocates will meet with Congressional Members to discuss issues important to the Ataxia community. This year’s topics will include:

  1. A Senate Resolution to declare September 25th as National Ataxia Awareness Day (S.Res. 339)
  2. The addition of “Hereditary Ataxia” into the Congressionally Directed Medical Research Program (CDMRP)
  3. Accelerating Access to Critical Therapies (ACT) for ALS (H.R. 3537/S. 1813)
  4. The BENEFIT Act (S. 373/H.R 34472)

 

Monthly Update - September 2021


Our September Monthly Update provides detailed information and links for the following topics:

  • United Against Ataxia Hill Day!
  • FARA Newly Funded Research
  • Upcoming Grassroots Events
  • New! Education Resources
  • The FARA Energy Ball
  • rideATAXIA Philly/Global Challenge/Dallas
  • Open & Enrolling Studies
  • The goals of the FA Global Patient Registry
  • The Pathway
More...

Read the Full Monthly Update
 

FARA Advocacy Newsletter - September 2021


Hill Day Registration is Open

Join NAF and FARA in raising awareness about Ataxia and supporting legislation that directly impacts our communities.

The third United Against Ataxia Hill Day will be held on Wednesday, September 29, 2021. It will be a virtual event so every U.S. resident, regardless of where you are, can participate; there is no cost or need to travel. Instead, you can speak to your Congressional Members right from the comforts of your home!
More...
Read the Full Advocacy Newsletter
 

August Monthly Update for Researchers

Request For Proposals:
Pharmacodynamic Biomarker Development

FARA is issuing a request for proposal (RFP) to support the discovery and validation of non-invasive and quantitative methodologies to measure the following in FRDA affected tissues (brain, spinal cord or heart):

  • Frataxin protein levels
  • Biochemical activities dependent on/downstream of frataxin function that can be surrogates of frataxin in inaccessible tissues
You can access the full RFP here.

Please submit a Letter of Intent here.

More...
Read the Full August Monthly Update for Researchers
 
 

United Against Ataxia Hill Day - Registration Now Open

Registration Now Open

United Against Ataxia Hill Day
September 29, 2021

We invite you to join NAF and FARA in raising awareness about Ataxia and supporting legislation that directly impacts our communities.

The third United Against Ataxia Hill Day will be held on Wednesday, September 29, 2021. It will be a virtual event so every US resident, regardless of where you are, can participate. There is no cost or need to travel. Instead, you can speak to your Congressional Members right from the comfort of your home!

Register Now
More...
Read the Full Announcement
 
 
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