Parents hope experimental treatment will conquer daughter's illness Nov 14, 2008
Gabrielle was diagnosed with a rare and deadly illness called Niemann-Pick disease type C. Her body cannot process cholesterol and deteriorates over time ... Niemann-Pick disease type C is a neurodegenerative disease that primarily strikes children in their early years ... According to the National Niemann-Pick Disease Foundation, there are only 300 known cases of Niemann-Pick Type C across the U.S. and only 500 worldwide. (Daytona Beach News Journal)
School keeps man fighting fatal disease Nov 8, 2008
Mr. Simpson is one of the few people in the world suffering from Niemann-Pick Disease, a rare, fatal neurological condition ... Niemann-Pick Disease is an inherited disorder in which the cells of the body are unable to properly process fat, said Karen Carter, a development pediatrician at Medical College of Georgia Children's Medical Center. (The Augusta Chronicle)
Boy, 2, Suffers From Rare Children's Alzheimer's... May 10, 2008
Taylor Smith, of Barrow-in-Furness in Cumbria, England, has been diagnosed with Niemann-Pick disease, type C, a disease that will cause him to develop signs of dementia before he hits his teenage years ... There are about 500 cases of Niemann-Pick disease diagnosed worldwide each year, according to the. (Fox News)
Disease Attacks Twins' Minds May 2, 2008
Like a pediatric version of Alzheimer's disease, Niemann-Pick Disease Type C (NPC), from which the girls suffer, causes patients to slowly lose their motor skills and then their minds ... In fact, the National Niemann-Pick Disease Foundation says NPC always is fatal and the vast majority of children die before age 20 -- with many not making it to the age of 10 ... " About Niemann-Pick Disease It took months before Hempel and her husband, Hugh Hempel, received the rare NPC diagnosis. "Affected... (ABC News)
Tomorrow's Hope plans event Apr 8, 2008
In 2007 recipients included Watertown Area Cares Clinic, and Watertown Area Health Services, as well as the Alzheimer's Association-Southeastern Wisconsin Chapter, Children's Hospital of Wisconsin--Milwaukee, Fort HealthCare, National Niemann Pick Disease Foundation, Rainbow Hospice Care and the UW Paul P. Carbone Cancer Center. We can tell you exactly where and how your money is being spent, Endl said, adding that more than 971,000 has been donated to Rainbow Hospice Care, more than 621,000 to... (Watertown Daily Times, WI)
Chemical chaperone could open door to treatment of neurological disorder Feb 6, 2008
An unexpected finding turned out to be a clue leading researchers at Washington University School of Medicine in St. Louis to propose a new treatment approach for Niemann-Pick disease, a rare, deadly neurodegenerative disorder. To overcome the genetic defect in Niemann-Pick disease, the researchers suggest that chemical compounds could potentially "chaperone" mutant protein molecules through the cell's quality control machinery ... Niemann-Pick type C, the rarest form of Niemann-Pick disease,... (EurekAlert!)
Making cents for a cure Dec 5, 2007
The foundation, which is dedicated to finding a cure for Niemann-Pick disease, receives a percentage of each sale-ranging from ... " In his first few years of life, King appeared to be a healthy child, but as he grew older, his condition mysteriously deteriorated. After several misdiagnoses, King was diagnosed with Type C Niemann-Pick disease. The illness has no cure, and Type C, which causes excessive amounts of cholesterol to accumulate within the liver, spleen and brain, is always fatal. Most... (Eufaula Tribune, AL)
* Zavesca may lose DOH funding Nov 5, 2007
The Department of Health's (DOH) committee on rare diseases decided last month that there is not enough evidence showing that Miglustat, the drug marketed as Zavesca, is effective in treating Niemann-Pick disease, a rare inherited disorder with no cure ... Hu is the doctor who first prescribed Zavesca for patients with Niemann-Pick disease in Taiwan. (Taipei Times, Taiwan -- World)
Partners energize Walk Fest Jun 19, 2007
It has done this by supporting Children's Hospital of Milwaukee, Fort HealthCare, National Niemann-Pick Disease Foundation, Rainbow Hospice Care, UW Carbone Comprehensive Cancer Center in Madison and Watertown Area Health Services. In nine years the effort has raise a total of 2,419,836. (Watertown Daily Times, WI)
Walk Fest will be this weekend in Jefferson Jun 15, 2007
Among the entities that have benefitted from the efforts of Tomorrow's Hope have been Children's Hospital of Wisconsin, Milwaukee Fort HealthCare, National Niemann-Pick Disease Foundation, Rainbow Hospice Care, UW Paul P. Carbone Comprehensive Cancer Center and Watertown Area Health Services. Tomorrow's Hope invites those interested to join in celebrating survival against life-limiting illness, or celebrating the lives of those who have been lost Friday and Saturday. (Watertown Daily Times, WI)
Busy week on Lake Eufaula continues Jun 9, 2007
The entry fee is $110 per team, with proceeds benefitting the National Niemann-Pick Disease Foundation. The tournament is also an evangelism tool used to reach anglers and children for Christ. (Eufaula Tribune, AL)
Obituaries - 3/31/2007 Mar 31, 2007
In lieu of flowers, the family asked that donations be made in Bailey's name to the National Niemann Pick Disease Foundation (www. nnpdf. (North County Times)
