Daniel, the little boy in the photo at left, was diagnosed with Niemann-Pick Disease, Type C in June 2011 at the age of 4 1⁄2. He lost his battle with this rare, genetic disease in November 2011, and that is when his family began working to raise money to help find a cure. Daniel’s mother Jill Flinton is now on the board of directors for the National Niemann-Pick Disease Foundation (NNPDF).
Niemann-Pick Disease (NPD) is a life-limiting metabolic disease that primarily affects children. This disease results in deterioration of the brain, central nervous system, liver, lungs and other organs. This disease is usually fatal by the late teens, and in severe cases, even before age three. At the present time there is no cure for Niemann-Pick Disease. There are only about 500 known cases of this disease in the United States.
Research is the key to beating Niemann-Pick Disease, and scientists are making progress. The National Niemann-Pick Disease Foundation (NNPDF) was established in 1992, when six families from across the nation met to establish a foundation to raise money for family support services and research. Since then, the Foundation’s membership has grown to over 350 families, and over $4.1 million has been applied toward research. As a result of this research, the gene responsible for Niemann-Pick Disease has been identified, experimental therapies are being tested and clinical trials are currently underway at the National Institutes of Health in Bethesda, Maryland.
Dan’s Dreams: A Celebration of Life and Hope will be held on Sunday, December 9th at the Ballston Spa Elks Lodge. This family friendly event will raise funds for research into the cause and treatments for Niemann-Pick Disease in honor of Daniel. The event will have kid’s activities, music, raffles and NNPD awareness information.
The NNPDF has as its motto, “Persevere!” as in, “be determined, be stubborn, endure, pursue, persist, press on, and get it done!” Families with a member affected by Niemann-Pick Disease need perseverance to face the daily challenges of the illness and to hold fast to the hope that one day soon, no parent will have to lose their child to this devastating disease.
Family-sponsored fundraisers such as Dan’s Dreams support the research essential to winning the battle against Niemann-Pick Disease. The Flintons, like many families across the country affected by NPD, work hard for the day when no more lives will be lost due to NPD.