New movie shines light on rare disease

BUFFALO, N.Y. (WIVB) - A new movie is shedding light on a rare disease that can strike at any time and is often fatal. It's called Pompe Disease, a rare disorder that attacks the muscles making it hard to move and breathe.

The new movie "Extraordinary Measures" is putting the disease in the spotlight. The film stars Harrison Ford and Brendan Fraser and tells the story of a father's search for a treatment after doctors diagnosed two of his children with Pompe. His crusade led to the first drug treatment, an enzyme the body desperately needs. Doctors, and patients with Pompe, are hopeful.

Gregory Pastores of the NYU Medical Center explained, "Fortunately the enzyme itself is a natural protein that the patients themselves don't make enough of and are now given as a supplement."

"In the last two years I've made some tremendous improvements and it's looking good," said Frank LaCoparra, a sufferer of Pompe Disease.

While Pompe Disease is fatal, and Frank, the patient we just heard from is weaker, he's encouraged by this breakthrough treatment and says he's optimistic about the future. The movie "Extraordinary Measures" debuted nationwide on Friday.