Niemann- Pick Disease - Ara Parseghian Medical Research Foundation (original) (raw)

VTESSE VTS-270 Clinical Trial: The Patient Experience

See a day in the life of Niemann Pick Type C Disease patients, their families and health care providers as they participate in the VTS-270 Phase 2b/3 clinical trial. https://vimeo.com/160183927

Niemann-Pick Type C is a genetic, cholesterol storage disorder that primarily strikes children with death occurring before or during adolescence. There is also an adult onset form of the disease.

The Ara Parseghian Medical Research Foundation is a non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease. The Parseghian Foundation is named in honor of Ara Parseghian, the much beloved and well-known Notre Dame Football Coach, whose three youngest grandchildren were diagnosed with NP-C in 1994.

Sadly, the Parseghian family has lost Michael, Marcia and Christa to Niemann-Pick Type C disease. Their hearts will be forever broken.

Their resolve, however, to continue the fight against NP-C disease is not broken. The Parseghians and thousands of volunteers and friends across the US and around the world are raising funds and pushing medical research so that a treatment can be found.

Please help us in this valiant effort so that everyone afflicted with Niemann-Pick around the world can live to realize their hopes and dreams. Thank you.