National Ataxia Foundation (NAF) for FA Research
Research Funded by NAF for FY 2007
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The National Ataxia Foundation is dedicated to improving
the lives of persons with ataxia and their families through research, education,
and support services. The NAF is a membership supported nonprofit organization
established in 1957 to provide help and hope to this nation’s ataxia families.
Along with its own research efforts in the early beginnings
of NAF, the Foundation began direct funding of ataxia research studies in 1978.
The Foundation research focus is on all forms of ataxia, including Friedreich’s
ataxia. Over the years the NAF has funded dozens of important Friedreich’s
ataxia research studies throughout the world.
In the early years of NAF funded Friedreich’s ataxia
research, little was known about the disease. To help accelerate ataxia
research, the NAF used a research “seed money” approach. The rationale behind
this approach was three-fold: 1) Increase ataxia research efforts, 2) Encourage
young scientists to become involved with ataxia research, and 3) For scientists
to utilize the research program to leverage additional support from other
sources.
These initial funded studies began the foundation for much
of the research which is being conducted today. The research “seed money”
approach significantly helped in raising the level of understanding in the field
of ataxia research, brought in new scientists to study ataxia, and has shown
significant increases in funding from other sources (many times a 5 to 10 fold
increase from the initial funding and as high as a 100 fold increase).
To help expand these efforts the NAF initiated two
additional ataxia research programs in the 1990’s. These research programs
included the NAF Young Investigator Award and the NAF Fellowship Award. The NAF
Young Investigator Award grants $100,000.00 to each successful candidate and is
specifically designed to encourage young scientists to make ataxia research
their career. A number of young scientists studying Friedreich’s ataxia have
received this award.
The NAF has a Medical and Research Advisory Board, which
currently number twenty five, and is made up of many of the world’s leading
ataxia clinicians and scientists. This advisory board appraises the NAF on a
broad range of medical and research issues relating to the ataxias. The
advisory board also advises NAF on research focus and makes recommendations in
funding promising ataxia research studies.
Over the past eight years the NAF has funded ninety-nine
(99) ataxia research studies, including many for Friedreich’s ataxia. This
world-wide research effort is bringing us closer to finding the answers to stop
ataxia. You can help in these important efforts by supporting the NAF’s
research programs.
You may designate your $100 or more research gift towards
promising Friedreich’s ataxia research. Checks may be written to “NAF” and to
assure that your wishes are followed, please write in the memo area of your
check “FA Research”. You may also donate on-line on the NAF web site
www.ataxia.org. Your tax deducible donation will significantly help in the
fight against Friedreich’s ataxia.
Along with its research efforts, the NAF provides an
extensive library of literate on ataxia. Fact sheets, brochures, books, videos,
and other publications are available. NAF members receive NAF’s 48 page
quarterly news publication, Generations, which provides the latest
information on ataxia research and articles relating to ataxia.
Members also receive discounts in attending the NAF annual
membership meetings. These three-day conferences provide a setting to learn the
latest information about ataxia research by scientists who are conducting the
research. There are also break out sessions on topics ranging from coping, to
genetics, to financial planning for the disabled. The conference also offers a
setting to meet and network with people who share the same concerns and issues
through “Birds of a Feather”.
The National Ataxia Foundation is a nonprofit organization
working towards effective treatments and cure for all forms of ataxia and to
help make life better for those who are affected by the ataxias.
Contact Information:
National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447-4752
Phone: (763) 553-0020
Fax: (763) 553-0167
E-Mail:
naf@ataxia.org
Web:
www.ataxia.org
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