About FARA

The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich’s ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances.

FARA was founded in September 1998 by a group of patient families and three of the world’s leading FA scientists — Drs. Rob Wilson, Bronya Keats, and Massimo Pandolfo. It was staffed and managed as an all volunteer organization until late 2005. FARA's Leadership and numerous patient families and friends have raised critical funds over the years to support FA research. Thanks to the brilliant and committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in FA patients. These understandings allow for more targeted approaches to treatment which are currently being developed for clinical trials.


FARA’s Progress

Since it’s founding in 1998, because of the focused efforts and dedication of so many individuals, families, organizations and institutions, FARA and the FA research community’s accomplishments include:

 

Assembled and grew the FA scientific community – When FARA was founded there were few scientists working on FA and there was no organization or entity behind bringing new researchers to FA or assembling the FA research community to promote growth and collaboration in the field. (details)

 

Supported basic, translational and clinical research - FARA has established a competitive, responsive, and highly regarded grant program for funding FA research worldwide. The sun never sets on FA research. In the early years many of the research projects FARA funded focused on establishing the basic understanding of FA at the genetic, protein and cellular level. In recent years FARA’s grant program has grown and expanded to include development of animal and cellular models, drug discovery and development and clinical trials. In 2013, FARA funded >28 FA research projects; $3 Million in grant award commitments. (More about FARA Grants)

 

Achieved clinical trial status within 7 years of FA gene discovery. In 1996, the gene and gene mutation that causes FA was identified. This was a huge milestone to understanding the cause of the disease. FARA’s founders viewed this discovery as a critical component to advancing research to development treatments for FA. In 1998, when FARA was founded there were no treatments or drugs on the horizon. (details)

 

Established essential translational research tools and clinical research infrastructure to accelerate and inform the drug development and clinical trials (details)

 

Established, nurtured and grew powerful public-private partnerships, becoming a recognized model in the field of collaborative research (details)