On June 5, 2010 Children’s Mercy Hospital had their 37th annual Hospital Hill Run that bears a lot of legacy in it’s longevity and fundraising for CMH!
This year I decided that I wanted to participate in the run for Brisan and Parker but for future events of Rare Diseases. I had never done anything like [...]
Promising Therapies for Niemann-Pick Type C Disease
In Rockville, MD on June 3-4th many of the researchers looking into different areas and avenues for Niemann-Pick Type C came together to discuss promising therapies. Although research is making progress, parents of NPC patients never feel that research is happening fast enough.
Join Our Cause On Facebook!
Help us spread the word about Niemann-Pick Type C! Join our cause on Facebook! Niemann-Pick Children’s 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 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.
Dementia in Our Kids – The Uninvited Thief
Dementia, who was the thief that thought up this bright idea? Sorry honey, what did you say again? OK that might be a case of selective hearing. We’ve all have had family or known people who have suffered with this horrible symptom. DementiaWhen you mention dementia, Alzheimer’s comes to mind or we all tend to think of an elderly person with their hands on their head not able to remember out of frustration pounding the table with their fists. STOP!… WAIT!… Did you know our children can suffer from dementia too?
Why Rare Diseases OUR Important
How many times have you been looking for something at your house but you accidentally find something you previously were missing? Wouldn’t it be a shame if the prize you were seeking was within reach but you discounted that it could be that easy? What if understanding Niemann-Pick Type C disease opened up the door to help millions of Americans with other disorders involving cholesterol? Of course nothing in life is easy nor will it always be within reach. With being human comes the tendency to make oversights.
Today, there is no cure or effective treatment
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. It changes your life.
“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)
About Us
Our Mission
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.
What is NPC?
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.
NPCF Blog
by Michael G Stults37th Annual Hospital Hill Run