Brisan and Parker Stults – Fighting Niemann-Pick Type C – The Childhood Alzheimer's

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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)

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What is NP-C?

Dr. Marc Patterson on NP-C

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Brisan & Parker's Website -BriParDun

Brisan & Parker's Blog

Niemann-Pick Children's Fund, Inc.

National Niemann Pick Disease Foundation

Ara Parseghian Medical Research Foundation

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My life grows more surreal by the day. Four years ago, I was told that my eight year old identical twins have a fatal genetic cholesterol disease called Niemann Pick Type C (the “Childhood Alzheimer’s”) and they would likely not live to see their 10th birthday. Now I have learned from top virus scientists that […]

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02Mar

CBS News Video – Rare Diseases Hit Youth

Dillion Papier, News, Niemann-Pick Type C No Comments

This is an awesome news story that CBS was so kindly to do and air! Brisan, Parker, and all of us had a chance to meet the Papier family on 1-8-09 during our stay at the National Institute of Health in Bethesda, MD for the Natural History study that is on going.

It was a honor to have met them and to see another family with a boy that is suffering from this same fatal disease. The Papier family has known about Dillion’s diagnosis for about 3-4 years and have done extensive events to raise money for NP-C. They have raised over 100k and have taken a firm stance on doing something positive not only for Dillion but for other beautiful children having thier childhoods taken away from them!

Here is the video:

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