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FARA Mission: The Friedreich's Ataxia Research Alliance (FARA) is a national,
public, 501(c)(3), non profit, tax-exempt organization dedicated to the pursuit of
educational, scientific and research activities leading to treatments for Friedreich's
ataxia and the related sporadic ataxias.
Research is the key to accelerating treatments
leading to a cure for Friedreich's ataxia and the related sporadic ataxias. A broader base
of knowledge allows researchers to understand more about the specific cellular and
molecular changes involved as well as the potential remedies required.
FARA will continue to:
- Promote scientific biomedical research, both basic and clinical, through research
grants, workshops and the collaborative exchange of information within the scientific
community.
- Serve as a patient advocacy group to educate the public, elected representatives, and
other government officials regarding Friedreich's ataxia and the related sporadic ataxias,
and the importance of funding biomedical research.
- Work cooperatively with government entities and the other organizations that support
scientific research aimed at treatments for this disorder.
- Rally patients, patient families, scientific investigators, health care providers, and
others to be supporters and advocates for scientific advancements that will lead to
treatments and cures.
FARA is exempt from federal income tax under section 501(a) of the Internal Revenue
Code as an organization described in section 501(c)(3).
- FARA and Key US Federal Policymakers
Headquarted in the Washington, DC Metro area, FARA maintains an excellent working
relationship with federal policymakers at the National Institutes of Health (NIH), as well
as the U.S. Congress.
- National Institutes of Health (NIH)
NIH -- the premier US federal government entity
responsible for biomedical research. The NIH conducts intramural research programs within
its own institutes and funds extensive research at laboratories throughout the United
States and around the world. The NIH consists of over twenty different institutes devoted
to various types of disease.
- National Institute of Neurological Disorders and Stroke (NINDS)
The National Institute of Neurological Disorders and Stroke (NINDS) is the leading NIH institute supporting
biomedical research on disorders of the brain and nervous system. FARA's president
participates in the quarterly NINDS advisory council meetings and works with the NINDS
leadership to strategize on enhancing the Institute's two-way communications with the
patient and scientific communities.
As a patient advocacy group, FARA raises public awareness of Friedreich's ataxia and
the related sporadic ataxias through a variety of activities, including congressional
testimony. FARA works regularly with congressional points of contact, tracking and
encouraging progress in the development of the NIH budget. FARA also keeps abreast of the
legal, moral, and ethical implications that arise in conducting research.
Congressional testimony of
Congressman Billy Tauzin
Congressional testimony of NIH
Director, Dr. Harold Varmus
Political Advocacy A useful resource
provided by the National Ataxia Foundation.
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