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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.

The Friedreich’s Ataxia Research Alliance Promotes Jennifer Farmer, MS to Chief Executive Officer

Downingtown, PA (December 5, 2019) - Press Release - The Board of Directors at The Friedreich’s Ataxia Research Alliance (FARA) today announced the promotion of Jennifer Farmer, MS to the role of Chief Executive Officer.

Serving as the Executive Director for FARA since 2007, Ms. Farmer was instrumental in the growth and stewardship of FARA’s research programs from $1 million in funding to $6 million today, the expansion of the Friedreich’s Ataxia Clinical Research Network, and the establishment of the Center of Excellence at Children’s Hospital of Philadelphia along with the Hamilton and Finneran Families. More than fifteen therapeutic development programs for FA have started in the biopharmaceutical industry during Ms. Farmer’s time as Executive Director, and she has led the way in ensuring FARA is a model in patient centered research.

As CEO, Ms. Farmer will continue to work closely with FARA’s Scientific and Research Officers and Directors and Scientific Advisory Board to prioritize and direct research discovery that answers key questions in the understanding of Friedreich’s ataxia (FA) designed to drive new therapeutic development programs. Ms. Farmer will also continue to work closely with FARA’s biopharmaceutical industry partners that are currently developing therapies in support of FARA’s mission to ultimately treat and cure FA.

FARA Board Chairman, Paul Avery said, “Throughout her tenure, Jen has consistently displayed an exceptional commitment to our mission of curing Friedreich’s Ataxia. Her unwavering work ethic, collaborative spirit, thoughtful strategic mindset, and overall managerial talents, are a few of the many traits that highlight her effective leadership style.”

Prior to serving as Executive Director for FARA, Jennifer split her time between grant manager for FARA and genetic counselor and clinical research coordinator in Dr. David Lynch’s FA clinic at the Children’s Hospital of Philadelphia. In these earlier roles, she was directly involved in the establishment of the Collaborative Clinical Research Network in FA, the creation of the FA Patient Registry, and managed FARA’s growing grant program.

View Press Release PDF

2019 International Ataxia Research Conference is a Success!

The international scope of ataxia research was well represented by over 430 conference attendees from twenty-one countries!  We are grateful for such meaningful participation from all aspects of the research community including 150 attendees from academia and regulatory, 140 attendees from industry, 100 junior investigators and representatives from seventeen patient advocacy groups.

We were energized by the dynamic exchange of ideas during the oral and poster presentations as well as during the flash talks and the mentoring session. We hope the attendees had the opportunity to foster collaborative relationships and left with a renewed sense of purpose.
Thank You
If you attended the conference - please take a moment to share your feedback by Taking this Survey.

IARC 2019 Sponsors

Freidreich's Ataxia: The CHUM and its partners involved in an international study to better understand the disease and its progression over time

CHUM Staff
Uncoordinated movements, impaired speech caused by muscle weakness, diabetes and cardiomyopathy: Friedreich’s ataxia hits hard and early. This neurodegenerative orphan disease, for which no treatment exists, generally manifests between the ages of 5 and 15, initially affecting walking.

Occurring in 1 in 30,000 people, the disease is rare. To identify the best ways of monitoring its progression, a research network has been created. CHUM neurologist Antoine Duquette and his colleagues at the Centre de réadaptation Lucie-Bruneau are collaborating in an international study directed by Dr. David R. Lynch of the Children’s Hospital of Philadelphia.

Read the entire article HERE

Global Ataxia Advocacy Organizations Unite to Host International Ataxia Research Conference in Washington, DC

On November 14th-16th, the Friedreich’s Ataxia Research Alliance (FARA US), Ataxia UK, fara (Australia), and GoFar (Italy) will host the International Ataxia Research Conference (IARC) in Washington DC.

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