The IPA has issued the following press release in regard to the film, Extraordinary Measures. (Download PDF, 393 kB)
Extraordinary Measures the Movie
A Discussion by Pompe Disease Support Groups
January 2010
For immediate release
Background
Extraordinary Measures is a new movie scheduled for release around the world starting in the US on January 22, 2010. Starring Harrison Ford, Brendan Fraser and Keri Russell it tells the story of a family struggling with a rare disease-the neuromuscular condition known as Pompe Disease (aka Acid Maltase Deficiency or Glycogen Storage disease Type 2).
The International Pompe Association (IPA) is a federation of nearly 40 national patient groups around the world who collectively support over 1000 patients and their families.
Pompe disease is an extremely rare, progressive neurological condition that affects people of all ages; the classical infantile form is particularly severe as it particularly damages the heart , respiritory muscles and skeletal muscle. Older infants, children and adults are affected to varying degrees and without treatment all may suffer from loss of muscle function and breathing difficulties. Quality of life is reduced and life expectancy is considerably shortened; most untreated infants do not live beyond their first birthday. Every patient has their own unique story, and every family is affected in its own way.
Extraordinary Measures
The film Extraordinary Measures focuses on the actions of one highly-motivated individual and his collaboration with a medical researcher. It shows how Pompe disease, a devastating illness, changes family life forever, something that is true whatever the severity or age of the sufferer.