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NBIA Disorders Association Announces Research Grants for Neurodegeneration with Brain Iron Accumulation (NBIA)


About NBIA Disorders Association

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 pertinent to NBIA; to provide emotional support to those afflicted with NBIA and their families; and to raise public awareness of NBIA. If you would like further information, please email at pwood@NBIAdisorders.org, or telephone at (619) 588-2315.

The NBIA Disorders Association is accepting applications for one-year grants for clinical and translational research studies related to the early detection, diagnosis, or treatment of patients with NBIA. Neurodegeneration with Brain Iron Accumulation (NBIA) is a group of rare, genetic, neurological disorders 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 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 for the disorders may be treated but there are no cures.

Research Objectives

The purpose of the NBIA Disorders Association Research Grant Program is to encourage meritorious research studies designed to improve the diagnosis or treatment of NBIA. The research can be conducted in the United States, countries of the European Union, Canada, Australia, New Zealand, Brazil, Argentina, Chile, South Africa, Japan, or Israel, and in other countries where adequate supervision of grant administration is possible.

Evaluation of proposals will follow NIH guidelines and include careful consideration of experimental or protocol design, objectivity or relevance of parameters measured, and statistical analysis plan.

Our research priorities reflect our goal to find cures for NBIA disorders and the understanding that strategic work in basic, translational and clinical research will be required to reach this goal. We strive to accelerate the pace of discoveries that lead to new therapeutics by supporting pilot and high-risk projects. The projects we support are expected to generate essential resources for the scientific community, advance knowledge about NBIA disease processes, and produce preliminary data to enable national and international funding to carry the work forward.

Our research priorities for the 2015 grant cycle are:

  • Support pilot studies to develop rational therapeutics
  • Develop animal and cell-based models*
  • Discover and validate biomarkers of disease
  • Delineate the molecular cascades that lead to early cellular changes of disease
  • Establish outcome measures to be used in clinical trials
  • Identify genes that are defective in NBIA disorders

* Proposals to develop models will be considered for multi-year funding with budget justification. Proposals should detail a research plan and a budget for the initial phase of the work, with the option for multi-year funding dependent upon reaching pre-defined milestones to contract further.

A grant not to exceed $45,000 for one year (with exceptions if warranted for multi-year funding) will be awarded by the NBIA Disorders Association. Research resources, including model organisms developed under this funding initiative must be shared per National Institutes of Health guidelines. These guidelines can be found at http://grants.nih.gov/grants/policy/model_organism

RFP Deadlines

  • Applications due by April 1, 2015
  • Award announcement by May 30, 2015
  • Grant funding to begin June 30, 2015Please see the Grant Application on the right side of this page for further details.

Please see the Grant Application on the right side of this page for further details.



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