Capstones

Graduation Date

Fall 12-31-2015

First Advisor

Yoruba Richen

Second Advisor

Sabrina Gordon

Subject Concentration

Urban Reporting

Degree Name

Master of Arts (MA)

Abstract

Special Muscles is a documentary that explores living with Duchenne muscular dystrophy, a fatal degenerative disease that weakens the muscles at an aggressive rate. The film will give an uncensored look at how one family copes with inevitability of the disease and their journey chasing a promising experimental cure.

Special Muscles follows 7-year-old Pietro Scarso and his family as they face the challenges, complications and promise of treating Pietro’s progressive muscle disorder. The film travels from New York to Los Angeles to Philadelphia to document the Scarso family’s race against time as Pietro undergoes a 96-week clinical trial for Eteplirsen, an experimental drug developed by Sarepta Therapeutics that has shown to dramatically improve walking ability in boys with Duchenne muscular dystrophy (DMD). Mom Dayna and dad Manni hope the weekly drug treatments will help curb the progression of the disease, which could cause Pietro to use a wheelchair before age 12 and possibly die in his 20s. Special Muscles will capture what Dayna calls a “rollercoaster” of emotions that she and Manni experience as their son fights this fatal disease while undergoing a two-year trial.

Special Muscles comes at a crucial time in the lives of the main characters and in the fight to find a cure for Duchenne muscular dystrophy. For the first time ever, the Duchenne community is close to having a drug on the market that can revolutionize how we treat the debilitating disease — and can lead to medical breakthroughs for other forms of muscular dystrophy. Special Muscles puts a human face to the importance — and power — of medical research and records the intimacy between family members as they chase survival.

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