The NPCF was formed to help create a entity that we could bring to communities that surround us the awareness needed to shed light on a disease that researchers are taking interest in. We felt after facing this reality that research has a different time line than parents yet they are making progress then why could we not help out in some shape, way or form?
“Dementia is something that is usually associated with older people. However, children, teenagers and young adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease Type C (NPC) is an example of one of these diseases, and one of its main symptoms is dementia.” (Hinton et al, 2005)
Niemann-Pick Childrens Fund, Inc. was organized in December of 2008 in order to raise awareness of Niemann-Pick Disease Type C and its affect on families in America; to raise money to promote research to help find treatments or a cure for Niemann-Pick Disease Type C: and to provide support to individuals and families affected by this disease through existing channels.
Niemann-Pick Type C Disease (NPC) simply put is FATAL. It is a genetic , neurodegenerative disorder that consequently accumulates large amounts of cholesterol and other excess fats in the cells of the liver, spleen, and brain causing progressive deterioration of the nervous system
Social Security adds 38 new medical conditions that qualify for disability help. The new conditions range from early-onset Alzheimer’s disease to rare diseases that primarily affect children which includes Niemann-Pick Type C!
Personally this seems like a relief for so many families. One of the goals of the Niemann-Pick Children’s Fund is how can [...]