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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 is proud to present: The first FA Research Flash Talk!


FARA is proud to present our 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). We will also allot time for a brief Q&A following the talks.

Click HERE to register for future sessions. You will have the option to select which sessions you wish to attend.

Monthly Update - May 2021


Hello friends,

Welcome to May and the start of FA Awareness month! FA Awareness Day is just around the corner on Saturday, May 15th. We are excited to join our partner, fara- Australia's, Lend Us Some Muscle™ (LUSM) campaign. If you haven't had the chance to join yet, it's easy.

  1. Challenge yourself or a group of friends to do something active during May
  2. Or simply flex your muscles and share your pics on socials with #lendussomemuscle #lusm2021
  3. Go to give.curefa.org/lusm to make a donation
Thanks to a generous matching gift challenge by The Burrows Hill Foundation, the first $25,000 donated to this campaign will be matched dollar-for-dollar!
More...
Read the Full Monthly Update
 

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!

More...
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.

More...

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

More...
Read the Full Monthly Update
 
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