About Niemann-Pick Type C:
This disorder causes progressive deterioration of the central nervous system due to the body's inability to metabolize cholesterol. Consequently, large amount of cholesterol accumulate within the liver, spleen, and brain. This metabolic disorder leads to a series of neurological problems. It has been termed as a childhood form of Alzheimer's. Children with this disorder rarely live into their teenage years.

Currently, there is no treatment for this disease.
Until recently, there has been little known about NP-C. Without a cure or treatment, victims of this syndrome gradually lose their ability to look up and down, walk, talk, control their muscles, eat, and grow. It is ultimately fatal.

A number of alternatives are being explored, including testing various therapies.
Accelerated research is key to saving the lives of NP-C sufferers, most of whom are children. As Coach Parseghian has said, "There will be no cure without research and no research without funding." He also has said, "We are in a race against time." Government funding, to this point in time, has been inadequate. Private donations are essential to continue the progress of this research.

Foundations for hope.
Work funded by the Ara Parseghian Medical Research Foundation (founded by the legendary former football coach of the Notre Dame Fighting Irish, who has lost three of his grandchildren to the disease) has isolated the gene responsible for NP-C. Work to identify drugs that could be used to treat NP-C is moving forward. The Foundationís effort will help all those suffering from the disease. The research will also be able to help those millions of people suffering from heart disease, strokes, Alzheimer's Disease, and other disorders that appear to be related to the metabolism of cholesterol.

Please visit these other sites to learn more about Jessica and others suffering from the disease, as well as what is being done to fight Niemann-Pick Type C:

Caring Bridges Website
The Ara Parseghian Medical Research Foundation
The National Niemann-Pick Foundation

The Feldenkrais Guild of North America
Help Kevin

Contributions will be gratefully accepted to the Jessica Leoni Trust made out to the Ara Parseghian Medical Research Foundation and/or the Jim Lambright Medical Research Foundation. Both Foundations are non-profit corporations that fund research projects to find a cure for Niemann-Pick Type C Disease. Your donation is tax deductible. You may send your contribution to:

The Jessica Leoni Trust
P.O. Box 83744
Los Angeles, CA 90083-0744

We will forward your donation. You may telephone us at (310) 649-6125.