Partners
Government Agencies | Corporate | Funding Partners | International Partners | Non-Profit Organizations | Friedreichs Ataxia Community Partners
2009 PARTNER OF THE YEAR
FARA partners with government agencies and corporations, and advocacy groups that support scientific research aimed at treatments for FA. These key partners are listed with a description of their work.
Government Agencies
The National Institutes of Health (NIH) is the premier US federal government entity responsible for biomedical research. FARA has provided seed grants to investigators that later became successful NIH applicants. To learn more about the NIHs support of FA research, visit the Advocacy page.
Corporate
OSI Restaurant Partners has supported FARA and FA research through monetary donations and event sponsorship. FARA is grateful to OSIs senior management, individual proprietors, and staff for their generous contributions.
Electronic Data Systems (EDS) provided expertise and countless voluntary hours to build the IT systems for FARAs online patient registry and grant management program. EDS also provides website maintenance as well as editing/ layout and design for FARAs newsletter, The Advocate. EDS has provided FARA with key infrastructure critical to FA research advancement.
Funding Partners
FARA believes that collaboration is the key to research advancement. Collaboration facilitates information and resource sharing in the interest of adequately funding the best research. Cooperation also prevents duplicate research efforts. FARA has co-funded FA research with the following domestic and international organizations:
The Muscular Dystrophy Association (MDA) is a dedicated partnership between scientists and concerned citizens aimed at conquering muscular dystrophy and related diseases that affect more than a million Americans. FARA and MDA co-fund several FA research grants including support of the Collaborative Clinical Research Network for FA.
The National Ataxia Foundation is dedicated to improving the lives of people affected by ataxia through support,education and research. FARA and the National Ataxia Foundation co-fund the Kyle Bryant Translational Research Award.
The American Heart Association is a national voluntary health agency to help reduce disability and death from cardiovascular diseases and stroke. FARA and the American Heart Association co-fund grants to research cardiomyopathy in FA patients.
International Partners
The Friedreich Ataxia Research Association (FARA Austrailasia) is based in Australia. FARA and the Friedreich Ataxia Research Association (FARA Austailasia) have cofunded a number of research projects including the Collaborative Clinical Research Network for FA.
Ataxia UK is a registered charity based in the United Kingdom. With the goal of finding a cure for a range of ataxias, the organization funds research into developing safe, effective ataxia treatments.
Based in Torino, Italy, the Go- Friedreichs ataxia Research fund was established in 2005 by the non-profit group RUDI Onlus Committee, to support the discovery of valid therapies to defeat FA."
Registered in Belgium, euro-ATAXIA is an international non-profit association whose member organizations work together to give people with hereditary ataxia as normal a life as possible. They have built a strong organization that represents people with hereditary ataxia throughout Europe, encouraged scientific research into causes and treatments, and campaigned for treatment availability.
The Spanish Federation of Ataxia (FEDAES) was formalized in Madrid in 2001. With the support of the Associations of Castile, doctors, investigators and ataxia families, the federation works towards treatments and a cure.
Non-Profit Organizations
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
The United Mitochondrial Disease Foundations mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.
Genetic Alliance transforms health through genetics. They promote an environment of openness centered on the health of individuals, families, and communities.
CHDI Foundation, Inc. . is a non-profit organization that is pursuing a biotech approach to rapidly discover and develop drugs that prevent or slow Huntington disease.
The A-T Children's Project is a non-profit organization that raises funds to support and coordinate first-rate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure or life-improving therapies for ataxia-telangiectasia, a lethal genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a strikingly high rate of cancer, especially leukemia and lymphoma.
Friedreichs Ataxia Community Partners
The Friedreichs Ataxia Parents Group (FAPG) is a closed list, limiting subscriptions to parents and guardians of children with Friedreichs Ataxia (or other childhood onset ataxias). From all over the world, parents who are having similar experiences raising children with FA communicate with one another.
FA_babelFAmily is an independent multilingual mailing-list born in order to become a source of information for all people coping with Friedreichs Ataxia in Europe and worldwide. All messages dealing with what is being done in the field of scientific research and fundraising in order to reach a cure for FA are particularly appreciated.
INTERNAF is an international e-mail based forum to exchange information and support for those who are diagnosed with ataxia. Open to patients, families and friends.




















