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the
NBIA Disorders
Association, formerly known as Hallervorden-Spatz Syndrome Association,
(HSSA) was originally founded in 1996 by President, Patricia Wood.
The goals of the association are to raise funds to support
research of NBIA; to provide emotional support to NBIA families; educate
the public; and to monitor research. If questions, please
e-mail at pwood@NBIAdisorders.org,
or telephone at (619) 588-2315.
The NBIA Disorders Association is accepting applications for one-year grants for clinical research studies related to the early detection, diagnosis, or treatment of patients with NBIA. Neurodegeneration with Brain Iron Accumulation (NBIA) formerly known as Hallervorden-Spatz Syndrome is a rare, genetic, neurological disorder characterized by the accumulation of iron deposits in the brain and progressive degeneration of the nervous system. It typically first appears in childhood. Presenting signs and symptoms may include difficulty walking, loss of balance, and problems related to speech. Those affected suffer a progressive loss of muscle control, sudden involuntary muscle spasms, and uncontrolled tightening of the muscles. Symptoms may also include disorientation, seizures, and deterioration of intellectual ability. Approximately half of the cases diagnosed have been linked to a mutation of a gene known as
PANK2. At the present time, symptoms may be treated but there is no cure.
The
purpose of the NBIA Disorders Association Research Grant Program is to
encourage meritorious clinical studies designed to improve the diagnosis
or therapy of NBIA. The research will be conducted in the United States,
countries of the European Union, Canada, Australia, New Zealand, Brazil,
Argentina, Chile, South Africa, Japan, or Israel, and where supervision
of grant administration is possible.
Grants
will be awarded to academic researchers to conduct small clinical
studies, the results of which could be used to obtain funding from NIH,
FDA or other funding agencies, or to attract a corporate sponsor.
Procedures or proposed therapeutic trials may be new, based on
recent biochemical or pharmacological evidence, or be in preliminary
states of clinical investigation. Evaluation
of proposals will include careful consideration of protocol design,
objectiveness of parameters measured, and statistical evaluation
proposed. Protocols that
focus on early detection, diagnosis, or treatment (pharmacological,
surgical, dietary, or medical-device related) will be given priority.
A grant not to exceed $30,000 for one year
(with exceptions if warranted) will be awarded by the NBIA Disorders Association for the support of
clinical research on Neurodegeneration with Brain Iron Accumulation.
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How to Use this Application Form
- Open this file on your
computer in Microsoft Word
- Do a “Save As” with the filename,
“2009 NBIA Grant Application-your last name”
- Fill out the application and submit by
June 12, 2009.
- Submission must be as an email attachment
addressed to info@NBIAdisorders.org.
Application Procedure – Letter of Intent Deadline June 12, 2009
- Your application must be
submitted with all of the following documents to be considered:
- An initial letter of intent
- A one-page abstract of the proposal
- Brief budget outline
- Cogent reasons why NBIA Disorders Association funding is essential
- A biographical sketch and bibliography
RFP Deadlines
- Letter of Intent by June 12, 2009
- Full proposal invitations by July 31, 2009
- Full proposal deadline October 1, 2009
- Award announcements November 17, 2009
- Funding to begin December 15, 2009
If study involves human gene
therapy, a copy of the NIH Recombinant DNA Advisory Committee (RAC)
review or waiver of review will be required.
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