A Medical Odyssey for Niemann-Pick Disease Type C

Reno couple’s game-changing cannabis venture has its origins in daughters’ ongoing medical odyssey.

Hugh Hempel opens his 2015 Ted Talk at the University of Nevada, Reno asking the audience what they would think if he told them his 11-year-old twins were using marijuana? After a pause, he continues, asking how is it possible for 11-year-olds to even get access to pot?

Hempel goes on to reveal to a rapt audience in an auditorium where you could hear a pin drop that up until two years ago, he was completely ignorant about marijuana. All of that changed after 2007 when his twins Addison and Cassidy, 13, were diagnosed, at almost four years old, with a fatal disease called Niemann-Pick disease type c, a rare progressive genetic disorder characterized by an inability of the body to transport cholesterol and other fatty substances (lipids) inside of cells, and often referred to as childhood Alzheimer’s.

With the rare diagnosis Hempel, 59, and his wife Chris, 48, began a “medical odyssey.” “Many families go through years of trying to get a diagnosis and it could be eight or 10 years before they find out what is wrong with their kids. It took us about 18 months…

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