About Niemann-Pick Disease
On her bicycle ride across American, Lynda will be raising funds and awareness for the Niemann-Pick Disease Foundation. She will ride in memory of her nephew, Alex and niece, Laura who both lost their battle to this devastating disease.
This rare, deadly disease robs a child of the gift of life. At the same time, parents must suffer through the gradual decline and certain death of their child. Diagnosis is still difficult and a treatment has yet to be found.
Niemann-Pick Disease is actually a small group of diseases that all work at a genetic level. Most are fatal from the ages of three to the early teens. Of the three most common types (Types A, B and C), Alex and Laura suffered from Type C. In Niemann-Pick C (NPC), patients are not able to metabolize cholesterol and other lipids properly within the cell. Consequently, excess amounts of cholesterol buildup in the spleen and liver while excess amounts of other lipids accumulate in the brain. This metabolic disorder results in damage to the nervous system that leads to a series of neurological problems that are ultimately fatal.
NDP is inherited. The mother and father each carry one copy of the gene and usually do not show any signs of the disease. Children who are manifested with the disease carry two copies of this abnormal gene. Each time carrier parents have a child, there is a one in four chance the child will have NPD.
Diagnosing NPD is not easy because the symptoms apply to many other conditions. Making accurate diagnoses and finding life-saving treatments is a long process. There is no treatment available for NPC. However, the primary gene that causes Type C has been isolated by researchers, clearing the way towards better diagnoses and treatment.
More information on this disease can be found on the foundations website at:
www.nnpdf.org or to contact the NNPDF: telephone - Toll Free: 1-877-CURE-NPC (1-877-287-3672) Office: 1920-563-0930 Fax : 1-920-563-0931
Email: nnpdf @idcnet.com
Donations to the Niemann-Pick Foundation are tax deductible and can be made online at: www.nnpdf.org
If you wish to make donation by check, please include this information:
Name:_________________________________
Address:_______________________________
City:__________________________________
State:_________________ Zip__________
Home Phone: (______)____________________
Email:__________________________________
Make the check payable to National Niemann-Pick Disease Foundation (NPD)
Please put Lynda’s Bike Ride in the memo portion of your check.
Mail to: National Niemann-Pick Disease Foundation
P.O. Box 49
Fort Atkinson, WI 53538-0049
This rare, deadly disease robs a child of the gift of life. At the same time, parents must suffer through the gradual decline and certain death of their child. Diagnosis is still difficult and a treatment has yet to be found.
Niemann-Pick Disease is actually a small group of diseases that all work at a genetic level. Most are fatal from the ages of three to the early teens. Of the three most common types (Types A, B and C), Alex and Laura suffered from Type C. In Niemann-Pick C (NPC), patients are not able to metabolize cholesterol and other lipids properly within the cell. Consequently, excess amounts of cholesterol buildup in the spleen and liver while excess amounts of other lipids accumulate in the brain. This metabolic disorder results in damage to the nervous system that leads to a series of neurological problems that are ultimately fatal.
NDP is inherited. The mother and father each carry one copy of the gene and usually do not show any signs of the disease. Children who are manifested with the disease carry two copies of this abnormal gene. Each time carrier parents have a child, there is a one in four chance the child will have NPD.
Diagnosing NPD is not easy because the symptoms apply to many other conditions. Making accurate diagnoses and finding life-saving treatments is a long process. There is no treatment available for NPC. However, the primary gene that causes Type C has been isolated by researchers, clearing the way towards better diagnoses and treatment.
More information on this disease can be found on the foundations website at:
www.nnpdf.org or to contact the NNPDF: telephone - Toll Free: 1-877-CURE-NPC (1-877-287-3672) Office: 1920-563-0930 Fax : 1-920-563-0931
Email: nnpdf @idcnet.com
Donations to the Niemann-Pick Foundation are tax deductible and can be made online at: www.nnpdf.org
If you wish to make donation by check, please include this information:
Name:_________________________________
Address:_______________________________
City:__________________________________
State:_________________ Zip__________
Home Phone: (______)____________________
Email:__________________________________
Make the check payable to National Niemann-Pick Disease Foundation (NPD)
Please put Lynda’s Bike Ride in the memo portion of your check.
Mail to: National Niemann-Pick Disease Foundation
P.O. Box 49
Fort Atkinson, WI 53538-0049
posted by Pam Hunt at
2:55 PM
