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 now accepting applications for one-year grants for clinical and translational research studies related to the early detection, diagnosis, or treatment of patients with Pantothenate Kinase-Associated Neurodegeneration (PKAN), the most common of the NBIA disorders. 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.
Between 35 and 50 percent of the NBIA population has PKAN. It is caused by mutations in the PANK2 gene. This gene provides the instruction for making an enzyme called pantothenate kinase. Researchers are investigating how this missing enzyme damages nerve cells in the brain and causes iron to build up.
There are two forms of PKAN: classic and atypical, although some people have symptoms that place them in between the two categories. At the present time, symptoms for the disorder may be treated, but there is no cure.
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.
Support studies to:
We are not considering applications for mouse models, stem cell studies or natural history studies this grant cycle.
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 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.
Please see the Grant Application on the right side of this page for further details.