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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.


Monthly Update - April 2021


Dear friends,

The updates in this month's newsletter reflect FARA's core value of collaboration. For example, FARA's newly funded research was co-funded with our partners at fara Australia, FARA Ireland, and the National Ataxia Foundation. Also, while the SoCal and Gainesville teams were in a friendly competition with one another in the rideATAXIA Coastal Challenge, it was their collective efforts that raised over $100,000 for research. Lastly, the enrolling clinical studies and trials are only possible through the collaborative efforts of clinicians, pharma, and FA families. Though the individuals in these groups are largely unknown to one another, they each need to fulfill their role of investigator, sponsor, or trial participant in order to successfully advance research.

We look forward to celebrating and highlighting more of our collaborative efforts in May- FA Awareness month, when we join fara Austrialia in their annual Lend Us Some Muscle campaign, and we bring back the FARA Flash Talk series featuring our Young Investigators. Until then, thank you for all the ways you collaborate to bring us closer to treatments and a cure for FA.

Sincerely,
Jen

Jen Farmer,
Chief Executive Officer

More...
Read the Full Monthly Update
 

FARA Advocacy Newsletter - Mar 2021


If the first FARA advocacy newsletter sparked your interest in advocacy, this month's will help it burn even brighter! Rare disease day provided a great opportunity to raise awareness of FA - let’s keep that momentum going throughout 2021! You will find information below on engaging advocacy events you can attend and important legislation that you can support. And, to ensure you have the tools you need to be most effective, FARA has launched a new advocacy page filled with information on current initiatives, as well as, guidance and resources to help you take action on the items that matter the most to you. Check It Out!

More...
Read the Full Advocacy Newsletter
 

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

Monthly Update - March 2021


Dear friends,

We are proud to share that for the 11th consecutive year, FARA has been recognized by Charity Navigator as a 4-star charity, their highest rating! This places FARA among the top 2% of charities evaluated by Charity Navigator, who base their ratings on a nonprofit's financial health and commitment to accountability and transparency. Click here to read more about FARA's rating. Thank you to the entire FA community for your generosity of time and resources which strengthen the organization and research effort.

More...
Read the Full Monthly Update
 

FARA Advocacy Newsletter - Feb 2021


Welcome to FARA’s first advocacy newsletter! 2020 brought many advocacy opportunities for FARA and the FA community, and 2021 is shaping up to be even busier! With the amount of material growing steadily, a separate newsletter was in order. You will still occasionally find time-sensitive information in the regular monthly newsletter but the majority of advocacy related material will now be shared here.

And what a great time for this newsletter to start! Rare Disease Day will be celebrating its fourteenth year on February 28th. There are many opportunities listed below where you can raise awareness for rare diseases in general, and FA specifically. Although legislative efforts will be U.S. based, there are many events that can be experienced remotely throughout the world. Hopefully, this information will ignite a desire to get involved. Advocacy is simply to change “what is” into “what should be.” Join FARA in making that change possible!

More...
Read the Full Advocacy Newsletter
 
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