Missouri family seeks more newborn testing May 12, 2009
The Cunninghams' hometown representative, Democrat Tom Todd, introduced a bill requiring Missouri to test for Krabbe and four other conditions known as lysosomal storage diseases: Pompe, Gaucher, Fabry and Niemann-Pick disease by July 1, 2010. Lysosomal storage diseases are a group of roughly 40 different diseases, each characterized by a specific enzyme deficiency. (North County Times)
Missouri votes to add 5 diseases to newborn screenings May 11, 2009
Cate Walsh Vockley, coordinator of education, referral and advocacy for the National Niemann-Pick Foundation, said the advocacy group has sought to have Niemann-Pick disease included on a federal list for newborn screenings. She said one hangup has been insufficient data, and that state lysosomal disorder screenings would help. (Jefferson City News Tribune, MO)
5-Year-Olds Suffer With 'Alzheimer's' Illness Apr 16, 2009
Most patients with NP-C don't live past their teens, according to the National Niemann-Pick Disease Foundation. The girls' parents, Hugh and Chris Hempel, said they're optimistic about the use of cyclodextrin an additive in cholesterol-free foods that studies show also might help combat the HIV virus. (Fox News)
A Mother's Journey: Saving Her Dying Twins Apr 7, 2009
Twins Addison and Cassidy Hempel are similar to their contemporaries in many ways but 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 ... Addison and Cassidy, now 5, had called Niemann-Pick Disease Type C. Their shared would lead both girls into a mental and physical decline, and near certain early death. (ABC News)
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)
