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 Foundation’s 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: