DVD Release: 9/17/2013
Bernadette Scarduzio was born with the most common inherited disease that no one has ever heard of: Charcot Marie Tooth (CMT) syndrome. CMT is the number one hereditary neuropathy in the world, affecting 1 in 2,500 people or nearly 2.6 million worldwide. It is a degenerative nerve and muscle disorder which leads the body to deteriorate over time. Sometimes the progression is slow. Sometimes it is rapid. In some cases, it is fatal. There is no cure. It is passed from parent to child and, too often, it is perceived as an embarrassing family secret, as it was in Bernadette’s family.
Filmmaker Josh Taub documents the physical decline of a young woman in her prime. During the course of the film, Bernadette goes from engaging in sports to depending on a scooter and assistance with the daily necessities of life. When her father, who shared the disease, suddenly passes away, Bernadette raises herself from suffering in obscurity to become ‘the face’ of CMT.
Bernadette’s indomitable spirit charges the film and demonstrates that the right attitude can overcome the most difficult obstacles.