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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 Advocacy Newsletter - April 2021


Rare Across America gave FA community members the first opportunity this year to speak directly to their Members in Congress but it won’t be the last! The issues discussed there are likely to be the ones that we see throughout 2021: robust funding for the NIH & FDA, development and access to rare disease therapies, telemedicine, and newborn screening, to name a few. As we move toward the summer and a virtual Rare Disease Week , FARA will continue to stay on top of developing initiatives that could impact FA research. This advocacy newsletter, FARA’s advocacy webpage, and virtual training sessions offered by FARA, and their advocacy partners will all help you get ready for Congressional meetings in July! Join your voice to those creating change!

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Read the Full Advocacy Newsletter
 

Join Us in May for the FA Research Flash Talk Series!

Join us for the
FA Research Flash Talk Series


This year, in honor of FA Awareness month, FARA is proud to present: The FA Research Flash Talks series - featuring Young Investigators from FARA funded laboratories around the world. This four-part series will cover key aspects of FARA funded research from gene silencing and disease mechanisms to therapeutic avenues and clinical insights. Each session will include Flash Talks from four to five Young Investigators (ie, postdocs and graduate students). Each Flash Talk will be limited to a maximum of five minutes and a single PowerPoint slide and will be suitable for a lay audience. We will also allott time for a brief Q&A following the talks.

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Read the Full Flash Talk Update
 

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

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Read the Full Monthly Update
 

FARA Advocacy Newsletter - March 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!

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Read the Full Advocacy Newsletter
 

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.

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Read the Full Monthly Update
 
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