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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.

Information on COVID-19 and Friedreich's Ataxia

There are now several vaccines for COVID-19 that have demonstrated safety and efficacy in human clinical trials. While FARA does not make medical recommendations and does not endorse any particular vaccine, as a resource for the community we have researched COVID vaccines and reached out to FA experts to create this information document on COVID-19 vaccines. (read the full PDF below)

Can't see this document? Click Here


Celebrating One Year of The Pathway!

At FARA, we believe that the road to treatments and a cure for Friedreich’s ataxia is paved by a steadfast commitment to funding research for FA. Last August, with this in mind, we launched The Pathway- our monthly giving community.

As we celebrate one year of The Pathway, we are grateful to those who have made an ongoing commitment to FA research.

Together, they have contributed over $40,000! This is equivalent to the average cost of research supplies for a two year grant!

This August, we invite you to join them in sustainably supporting FARA’s mission through a monthly gift. Our goal is to add 31 new supporters to The Pathway- 1 for each day of the month. When you join The Pathway with a monthly donation of $10 or more, you are joining a community invested in setting a path to treatments and a cure for FA through research.

A recurring donation to FARA is a budget-friendly way to help FARA fund and advance research with urgency. For more information or to join today, click the button below.

Join The Pathway Today

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.


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...

Read the Full Advocacy Newsletter
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