Friedreich's Ataxia Research Alliance

Ronald J. Bartek at NCATS Day 2017 (cropped)

Friedreich's Ataxia Research Alliance (FARA) is a non-profit organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia (FA), a debilitating, life-shortening, degenerative neuro-muscular disorder. Since its establishment, FARA has been at the forefront of efforts to improve the lives of individuals affected by Friedreich's ataxia through research funding, advocacy, and collaboration with patients, scientists, and pharmaceutical companies.

Mission and Vision

The mission of the Friedreich's Ataxia Research Alliance is to marshal and focus the resources and relationships needed to cure FA by advancing research, drug development, and clinical trials. FARA's vision is a world without Friedreich's ataxia, where those affected by the disease can lead full and active lives free of the physical and emotional burdens imposed by this condition.

History

Friedreich's Ataxia Research Alliance was founded by a group of patient families and leading scientists who recognized the urgent need to bridge the gap between the scientific understanding of FA and the development of treatments. Since its inception, FARA has grown into a global leader in the fight against Friedreich's ataxia, fostering international collaboration among scientists, pharmaceutical companies, and the FA patient community.

Research and Funding

FARA supports a wide range of research initiatives aimed at understanding the causes of FA, developing therapeutic strategies, and improving clinical care for patients. This includes basic research to uncover the genetic and molecular mechanisms of the disease, drug discovery and development efforts, and clinical trials to test new treatments. FARA's innovative research programs and funding mechanisms are designed to accelerate the translation of scientific discoveries into meaningful therapies for FA patients.

Advocacy and Awareness

In addition to funding research, FARA plays a critical role in advocacy and awareness-raising within the FA community and beyond. The organization works to educate policymakers, healthcare providers, and the public about Friedreich's ataxia and the urgent need for research funding. FARA also provides resources and support to individuals and families affected by FA, helping them to navigate the challenges of living with a rare disease.

Collaboration and Partnerships

FARA believes in the power of collaboration to drive scientific progress. The organization partners with other non-profits, research institutions, and pharmaceutical companies to share knowledge, resources, and best practices. Through its collaborative efforts, FARA aims to create a synergistic research environment that can more effectively address the complex challenges of FA.

Events and Fundraising

FARA organizes and supports a variety of events and fundraising activities to support its mission. These include scientific conferences, community awareness events, and fundraising campaigns. The funds raised through these activities are critical to advancing FARA's research and advocacy efforts.

Conclusion

The Friedreich's Ataxia Research Alliance is a beacon of hope for the FA community, driving forward the search for a cure through its commitment to research, advocacy, and collaboration. By bringing together the collective efforts of scientists, patients, and industry partners, FARA is making significant strides towards a future free of Friedreich's ataxia.

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