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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 job posting - rideATAXIA Event Coordinator

Click to view PDF
FARA is seeking a full time Event Coordinator for the rideATAXIA program.
Please click HERE to view the PDF.
 

FARA Minutes of Science - Episode 7


Episode 7- "The Balancing Act of Frataxin" in the FARA Minutes of Science (MOS) series is out now. Learn more about ongoing research in Dr. Jill Napierala's and Dr. Helene Puccio's labs to determine the appropriate amount of frataxin for therapeutic benefit.

Special thanks to Carli Hanson for narrating this month's episode.

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

Monthly Update - August 2021



Dear Friends,

The treatment pipeline for Friedreich’s ataxia is in a critical phase of development. There are clinical trials in process and more to become available by the end of 2021 and into 2022. All these studies are important as we need multiple treatments to address the symptoms and unmet medical need for individuals with FA.

Enrollment, participation, and completion of a clinical trial is an important commitment and a personal decision. Individuals who participate in a trial or research study are not only making a decision that can impact their own personal health, but also impact the whole FA community. We need individuals to voluntarily enroll and participate, to adhere to the study protocol, and to complete the study and final visits. Studies that fail or have inconclusive results due to lack of participation, lack of compliance, or high dropout rates, slows our progress towards treatments and a cure for FA.

When participants withdraw from a clinical trial due to travel fatigue to adhere to the clinical trial protocol, concern of being on placebo, or desiring to enroll in a different study, there is significant risk that the clinical trial will not reach conclusive results or meet its endpoint to determine safety and efficacy of the drug. Our persistence and dedication to research and advancing treatments for FA are bringing our community several choices of investigational studies with several more on the horizon. Please consider your personal situation and upcoming life events, along with the risks and benefits and goals of the trial or research study when enrolling in a clinical trial. Properly conducted and completed research studies deliver results we can have confidence in and will change the future for those diagnosed and living with FA.

Sincerely, Jen

Jen Farmer, Chief Executive Officer

More...

Read the Full Monthly Update
 

Register for the USF Friedreich's Ataxia Scientific Symposium


Register for the Symposium

Join USF Ataxia Research Center along with the Friedreich's Ataxia Research Alliance (FARA) for a special interactive symposium focused on advancing therapeutic approaches. The symposium will feature updates for ongoing clinical trials along with drug development efforts targeting the root cause of this genetic disease. A special panel of individuals living with FA will also share their experiences and perspectives.

Please Note: While in the past we have enjoyed sharing a beverage and hors d'oeuvres with you at the symposium cocktail reception, out of an abundance of caution, this portion of the evening will not take place this year. All attendees will be required to mask at this event. Thank you for understanding.

Hotel Block Information

Agenda




July Monthly Update for Researchers


FARA Newly Awarded Research Grants

Awards for Innovative Mindset (AIM)
FARA and fara Australia are proud to announce the recipients of the Award for Innovative Mindset (AIM). AIM was designed to promote the initial exploration of high-risk, high-gain, and potentially groundbreaking concepts in FA research. 10 applications were received and 2 were awarded funding:

Nuclear frataxin and the regulation of macrophage activation
Marco Carpenter, PhD – Children’s Hospital of Philadelphia

Dentato-Thalamo-Cortical tracts in Friedreich Ataxia: impact of its modulation on Friedreich Ataxia symptoms and brain functional architecture
Gilles Naeije, MD, PhD - Université Libre de Bruxelles, Belgium

General Research Grants

Testing whether somatic GAA expansions are a therapeutic target for FRDA
Ricardo Mouro Pinto, PhD - Massachusetts General Hospital, Harvard Medical School and Caroline Benn, PhD – LoQus23 therapeutics

Testing the efficacy of dietary butyrate in ameliorating ataxic symptoms in Friedreich’s ataxia mouse models
Daniele Lettieri-Barbato, PhD – University of Rome Tor Vergata, Italy

Co-sponsor AFAF

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