Directory: Research Institutes and Organisations [Lincolnshire Post-Polio Network]

Research Institutes and Organisations

Research Institutes and Organisations Index

International | USA

International

The GINI Research Fund
For Post-poliomyelitis and Neuromuscular Respiratory Research.

The one million survivors of poliomyelitis in the United States, and the 12 million worldwide, know there are consequences of living and aging with a disability. They also know that funding for research into their problems is limited.

Gazette International Networking Institute (GINI) established The GINI Research Fund in 1995 dedicated to "seeking scientific information leading to eventual amelioration of the consequences of poliomyelitis and/or neuromuscular respiratory diseases."

The GINI Research Fund with a corpus of $100,000 will award its first grant from the interest in the fall of 2000.

Q: What research will GINI support?

A: The initial modest grants will help support researchers, scientists, and clinicians worldwide to investigate the cause(s), treatment, and management of post-poliomyelitis and neuromuscular respiratory disease.

As it approves grants, GINI will foster new innovative research - both basic science and clinical - that will result in improved quality of life for people with disabilities, as well as support valid ongoing research.

Q: How will funding decisions be made?

A: A panel made up of peers and people with disabilities will review all grant applications that meet established requirements for respiratory research or post-poliomyelitis research. This panel's recommendations will be reviewed by the GINI Board of Directors, who will make the final funding decisions.

Q: How can contributions be made?

A: Gazette International Networking Institute is a not-for-profit 501(c)(3); Federal ID No. 34-0961952. Tax deductible contributions can be made payable to GINI. For more detailed information, contact Gazette International Networking Institute, 4207 Lindell Blvd., #110, Saint Louis, MO 63108-2915 USA (314-534-0475, 314-534-5070 fax, gini_intl@msn.com, www.post-polio.org).

Directory - Gazette International Networking Institute (G.I.N.I.).

USA

National Institute of Neurological Disorders and Stroke (NINDS)
Medical Neurology Branch, Muscular Diseases Section
http://intra.ninds.nih.gov/mnb/nds/index.html
Currently Unavailable

The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.

The Muscular Diseases Section of the Medical Neurology Branch headed by Marinos C. Dalakas, M.D. conducts clinical studies and laboratory investigations to determine etiology (infection/immunity and/or genetics) of patients with neuromuscular disorders and explore new therapies.

Current research interests include studies on the new weakness occuring in patients with prior paralytic poliomyelitis (post-polio syndrome). One such study, Protocol Number: 82-N-0083, is we understand, currently (as at July 1999) recruiting patient participants. [UPDATE. We understand that this study currently has sufficient patient participants and recruitment has been suspended for the time being.] The purpose of the study is

...to apply specific neuromuscular, electrophysiological, histological, virological, and immunological tests to answer pertinent questions regarding the pathogenesis of the post-polio syndrome. Studied patients will undergo a series of clinical neuromuscular evaluations, quantitative muscle testing, electromyography including single fiber EMG, immunogenetic, viral and immunochemical studies in the serum and spinal fluid, muscle biopsy and swallowing evaluation. Although this is not a therapeutic study, the information obtained would help us understand the pathogenetic mechanisms of the new weakness and could help us design possible therapies.

For more information on this study including contact details see Title: Post-Polio Motor Neuron Disease: Clinical, Virological, and Immunological Studies, Protocol Number: 82-N-0083
The above document is no longer available.

There are a number of sections at the NIH site that provide additional general information on NIH clinical studies, namely:
Clinical studies--what are they?
Taking part in current studies at the NIH Clinical Center.
Referring a patient.

NINDS also provide a factsheet: NINDS health information on post-polio syndrome.

NewsBites - 15th June 1998 - NINDS Post-Polio Research Budget Increased

The Lincolnshire Post-Polio Network
Registered Charity No. 1064177
An Information Service for Polio Survivors and Medical Professionals

The inclusion of a resource in this directory does not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Primary Document Reference: <URL:http://www.ott.zynet.co.uk/polio/lincolnshire/directory/research.html>
Alternate Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/directory/research.html>
Last modification: 19th May 2009.
Last information content change: 19th May 2009.