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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.


Minutes of Science - Episode 8 - "FACOMS"


Episode 8 of the Minutes of Science is now available! Tune in as our narrator, Kate Walker, explains the Friedreich’s Ataxia Clinical Outcome Measures Study (FACOMS) and its critical role in advancing FA research. Thank you to everyone who participates in this study and the staff at the CCRN sites who carry it out.

To catch the other episodes in the Minutes of Science series - View the full playlist
 
 

October Monthly Update for Researchers

ICAR 2022: Abstract submission and registration are now open


The inaugural International Congress for Ataxia Research (ICAR) will be held at the Caribe Royale resort in Orlando, Florida, USA. Please save the date for March 15th – 18th, 2022.

Travel bursaries and poster awards are available for junior investigators, i.e. students, postdocs of 5 or fewer years (accounting for career disruptions), medical residents or fellows and working in a mentored environment. To apply for a travel bursary when submitting an abstract upload one pdf file that includes your CV and a very brief statement expressing your interest and indicating any financial constraints that would prevent your attendance. You can submit your abstract and register here.  Abstract submission deadline is November 8, 2021.

COVID-19 Information
COVID-19 is a rapidly evolving situation. The ICAR Planning Committee is still planning and preparing for an in-person congress with a live stream of main stage presentations. However, we are developing contingency plans that will allow a quick response to changing conditions. These include postponing the event or pivoting to a fully virtual conference. We plan to provide further updates by the end of 2021 and recommend that attendees do not book non-refundable travel until that time.

More...

Read the full October Monthly Update for Researchers
 
 

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
 
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