Friedreichs Ataxia Research Alliance Fara

FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.

FARA focuses on grant making for FA research and building collaborations with organizations dedicated to advancing treatments for FA.

Due to the progressive nature of the disease and the promise of treatments in development, there is urgency to our efforts. Directing attention and resources to FA research and partnering with others that share this commitment, FARA believes it can help bring forward effective treatments and a cure for FA.

-Grant Program- FARA supports research by funding and facilitating a competitive and highly regarded grant making program that supported greater than 5 million dollars in research in 2016 (with 6M budgeted for 2017) and focuses on translational and clinical research (moving discoveries through development to clinical improvements for patients).
-Clinical Network & Trials- FARA funds the Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA) - an international network of clinical research centers that work together to advance treatments and clinical care for individuals with Friedreich's ataxia.
-Scientific Conference Program- FARA promotes collaboration among scientists, advocating for public-private partnerships that support drug discovery, drug development and clinical research and hosting open forums for leading scientists to share their insights, ideas and challenges to advancing treatments for FA.
-Patient Registry- The FA Global Patient Registry is the only worldwide registry of Friedreich's ataxia patients. This registry currently holds the demographic and clinical information on more than 2,000 Friedreich's ataxia patients from across the United States and internationally. This registry was created to serve the patient, physician, and research communities.
-Advocacy- FARA works cooperatively with government entities and the other organizations that support scientific research aimed at treatments for this disorder. FARA also rallies patients, patient families, scientific investigators, healthcare providers, and others to be supporters and advocates for scientific advancements that will lead to treatments and a cure.

Thanks to the committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in patients, such as gene mutation, decreased frataxin production, iron sulfur cluster formation, and mitochondrial dysfunction. FARA is supporting the development of treatments aimed at each of these different mechanisms of damage. Because it is based on solid basic science discovery, this targeted approach to treatment has great potential. Furthermore, FA researchers believe that treatment will come in the form of a “cocktail" therapy - meaning that therapies aimed at the different mechanisms of damage have the potential to be used in conjunction with one another to treat the disorder. For further information on this research, visit the Research Pipeline page: http://www.curefa.org/pipeline