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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.


FARA Minutes of Science - Episode 6


Announcing the latest installment in the Minutes of Science series- breaking down your FARA funded research in just a few minutes. In Episode 6: Track-FA, you will learn more about the TRACK-FA study: bioimaging of brain and spinal cord.

TRACK-FA is a natural history study to investigate brain and spinal cord changes in individuals with Friedreich ataxia. If imaging differences in the central nervous system are correlated with progression of FA, these differences could be used in future clinical trials to monitor treatment outcome.

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

Monthly Update - July 2021



Dear Friends,

As part of our ongoing education initiative, FARA and the Friedreich's Ataxia Center of Excellence at Children's Hospital of Philadelphia will host an FA Symposium on October 10th. This event will be offered both in-person and streamed online and provide people living with FA and their families with up-to-date information about therapeutic approaches and current research in Friedreich’s ataxia. The in-person portion will take place at the Crowne Plaza in King of Prussia, PA and run from 8:30am-4:30pm. Consider making it a FARA weekend, as rideATAXIA Philly will take place the day prior to the symposium on October 9th. For more information or to register for the symposium, click HERE.

More...

Read the Full Monthly Update
 

FARA Advocacy Newsletter - June/July 2021


The 10th Annual Rare Disease Week started July 14, and runs through July 22! It is virtual this year, so regardless of where you are, you can do it! It is a great opportunity to learn about pending US legislation impacting rare disease, gain some advocacy training and, if US based, speak directly to your Members of Congress &/or their staff.

There is still time for you to register and tune in for many of the excellent programs offered during Rare Disease Week.

If you are registering now...

More...
Read the Full Advocacy Newsletter
 

June Monthly Update for Researchers


FARA Grant Program

FARA is grateful to all investigators for submitting applications to the FARA grant program. All investigators interested in FA-related research are invited to submit a Letter of Intent (LOI) through our submission portal (https://webportalapp.com/sp/login/fara_grants). The deadline for the last 2021 LOI cycle for General Grants and Postdoctoral Fellowships and Awards is July 15. The LOI must explain how the proposed research addresses FARA's grant program priorities. As FARA's funding resources are limited, this is a competitive, peer-review process, and the LOIs that specifically address FARA’s research priorities are more likely to be invited to submit a full application. Please see more information on how to apply for a FARA grant at https://www.curefa.org/grant-apply

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

FARA's 2020 Annual Donor Impact Report is now available

FARA's 2020 Annual Donor Impact Report is now available online.
To read about key research programs and advances, as well as the fundraising efforts that fuel them, click the image below.


 

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