Niemann-Pick Children’s Fund
Niemann-Pick Children’s Fund, Inc. was organized in December of 2008 in order to raise awareness of Niemann-Pick Disease Type C and its affect on families in America; to raise money to promote research to find treatments or a cure for Niemann-Pick Disease Type C: and to provide support to individuals and families affected by this disease through existing channels.
Michael and Jennifer Stults
Michael and Jennifer Stults who’s two eldest son’s Brisan and Parker were diagnosed with this rare neurodegenerative disease in August/September 2008 after years of aggravating doctor’s visits trying to understand what is wrong with their children, organized the Niemann-Pick Children’s Fund, Inc. The concept was simple, how do they do their part and help fight this monster of a disease? How do they give back? With like minded individuals and close friends they formed NPCF to bring hope and opportunity to families that uniquely understand these pressures that burden their lives every day.
Niemann-Pick Disease Type C sometimes known as the “childhood Alzheimer’s” is a fatal inherited metabolic disorder. No specific treatment is available, and approximately 50% of cases present in patients younger than 10 years of age. The average age of diagnoses for Niemann-Pick Type C is 10.4 years, with the majority of the cases diagnosed before the age of 6.9 years. The average age of death for NP-C was 16.2 years, with one-half of patients dying before the age of 12.5 years.
No Cure But Progress
Although there is no known cure for Niemann-Pick Type C, nor is there any FDA-standard approved disease modifying treatment, supportive care, like that provided by NPCF, is essential and substantially improves the quality of life of people affected by the disease. NPCF provides supportive services such as giving and receiving emotional support, providing assistance to Niemann-Pick families in crisis, sharing resources and ideas about the disease and treatment of the disease, providing a forum to offer practical suggestions for daily care of Niemann-Pick children; providing a means of networking with other Niemann-Pick Families.
In addition to its primary purpose of providing this much-needed support to families affected by Niemann-Pick Disease Type C, NPCF’s present and future activities include fundraising activities to promote medical research to find a cure for Niemann-Pick Type C. The majority of the money raised by and for NPCF goes toward program services such as medical research grants, educational materials, and family support.
Currently NPCF is working closely with the Ara Parseghian Medical Research Foundation (www.parseghian.org), a non-profit organization that is funding 25 medical research projects to find a treatment for Niemann-Pick Type C disease. Additionally, a portion of the money raised by NPCF is donated to the National Niemann Pick Disease Foundation (www.nnpdf.org) to help support families suffering from the effects of Niemann-Pick Type C nationwide and the world. NPCF will allow donations to be made directly, through its website (www.NPCFund.org); and will also accept donations from www.BriParDun.com, which has provided a method of donating directly to NPCF.
Niemann-Pick Children’s Fund, Inc
P.O. Box 230
Grain Valley, MO 64029