Ara Parseghian Medical Research Foundation

The Ara Parseghian Medical Research Foundation (APMRF) is an international, non-profit, voluntary organization dedicated to funding research projects to expedite a cure for Niemann-Pick disease type C (NP-C); promoting collaborative research efforts among experts in cholesterol metabolism; and studying parallel pediatric neurodegenerative disorders. NP-C, a rare inherited disorder of childhood, is a degenerative disease that causes progressive deterioration of the nervous system due to an inability to properly break down cholesterol. Excessive amounts of cholesterol accumulate in the brain, liver, and spleen leading to a variety of symptoms and findings. These may include abnormal enlargement of the liver and spleen (hepatosplenomegaly); difficulty walking (ataxia) and positioning the arms and legs; slurred or slow speech; difficulties performing certain eye movements (vertical supranuclear gaze palsy); and additional symptoms. During mid-adolescence, progressive neurological problems usually lead to life-threatening complications. The foundation’s purpose is to speed the search for a cure by funding research and promoting worldwide interaction among scientists, research institutes, universities and pharmaceutical companies working on NP-C and related diseases.