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

Topics

Did you forget something…

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)

Meet Brisan & Parker

Bath Time

Put in Perspective

What is NP-C?

Dr. Marc Patterson on NP-C

More Information

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

Hide and Seek Foundation

By TwitterIcon.com

Tweet Me This:

No public Twitter messages.

Brisan & Parker

NPCFund

Addi & Cassi Hempel

FDAs Orphan Drug Workshop Featured in Wall Street Journal – Push To Cure Rare Diseases
Below is a story that ran in today’s Wall Street Journal (Page A 3) on the FDA workshop I attended a few week ago at the Keck Graduate Institute in Claremont, CA. We filed an orphan drug application for Cyclodextrin for the treatment of Niemann Pick Type C disease, an ultra rare cholesterol disease that [...] […]
FDA Does Not Approve Actelion’s Zavesca in US – Distressing News For Niemann Pick Type C Community
Actelion, the makers of Zavesca, today put out a brief statement saying that the U.S. Food and Drug Administration did not approve Zavesca and wants more information from the company on treating Niemann Pick Type C, a rare and dementing neurological disease that afflicts our six year old identical twins, Addi and Cassi. Niemann Pick Type C disease is caused […]

Web Of Hope

New non-drug fix for HIV?
The Scientist Magazine By Alison McCook 30th June 2009 Researchers are slowly establishing a connection between an extremely rare genetic disease and HIV — and homing in on a safe, non-prescription compound that could treat both. Recently, James Hildreth at the Meharry Medical College School of Medicine in Nashville, Tenn., and his colleagues found tha […]
Wacker Chemie Expands US Based Cyclodextrin Facility To Meet Increase In Worldwide Demand For Sugar Molecule
Wacker Chemie, the Munich-based chemical company, announced that is has expanded its US based cyclodextrin facility in Eddyville, Iowa. According the the press release issued by Wacker, the new cyclodextrin facility increases the company’s capacity for alpha (α) and beta (β) cyclodextrins by 50 percent and doubles its capacity for gamma (γ) cyclodextr […]

The Children’s Rare Disease Network

Looking For A Page?

16Sep

Fighting For The Lives Of Children

Brisan, Jenn Stults, Michael, Michael Stults, Mike & Jennifer, News, Niemann-Pick Type C, Parker, Updates No Comments

Three of Cindy and Mike Parseghian’s four children lost their lives to a disease called Niemann-Pick Type C, an extremely rare neurodegenerative syndrome without a cure. At Notre Dame, Kasturi Haldar works at the Center for Rare and Neglected Diseases, searching for a cure for this vicious genetic disorder.