leave a comment --Ken Fox
Eleven years after chronicling the sad fate of American farmers in their superb and wrenching debut, TROUBLESOME CREEK: A MIDWESTERN (20050, filmmakers Steven Ascher and Jeanne Jordan profile the Heywoods, another American family facing a very different kind of crisis: The slow death of their 29-year-old son Stephen Heywood from Amyotrophic Lateral Sclerosis. More commonly known as Lou Gehrig's Disease after the famed Yankee first baseman who succumbed to the devastating neurological syndrome in 1941, ALS destroys the neurons responsible for voluntary muscular activity and gradually leads to a withering atrophy. Eventually breathing becomes impossible, and while ALS sufferers like Stephen Hawking can survive for years on a respirator, those who decide against such artificial life support eventually die within two to five years of their diagnosis. So far there is no treatment, surgery or drug to treat ALS, so when older brother Jamie Heywood learned of his brother's illness, he quite his job as a successful entrepreneur to concentrate on establishing a foundation dedicated to finding a cure for ALS. Jamie soon began attracting researchers eager to be working outside the confines of traditional institutions, and soon the rapidly growing ALS Therapy Development Foundation moved out from the Heywood's Newton, Mass., basement and into a much larger tactility were they set about exploring the possibilities of new and existing drugs as well as gene, cell and antibody therapies in an unorthodox manner that earned them their reputation as "guerilla scientists." Ascher and Jordan's moving film, which incorporates interviews with Stephen and Jamie's friends and family and poignant video footage of much happier times, follows this comfortable, upper-middle class American family that never seemed to have encountered much in the way of such serious tragedy over the course of several years. Father John Heywood, a professor of engineering at MIT, takes on extra work to help manage expenses insurance won't cover, while mom Peggy Heywood dives into the physical minutiae of caring for her ailing son, perhaps as a way to avoid confronting the overwhelming emotional fact of his disease. But mostly the film focuses on Jamie's attempts to find an effective treatment in time to help his brother, and for all his good intentions, the Foundation is not without controversy: Jamie, who doesn't have a background in biology and has what one foundation member describes as an "egg shell-thin understanding" of the science involved, and the foundation's members make their findings public on the Internet without first submitting them to the customary peer review. Jamie's desperation, however, is understandable, as is his anger at the pharmaceutical establishment that continues to fail ALS sufferers. As the film makes pointedly clear, ALS is what is considered an "orphan disease," meaning drug companies aren't willing to devote their resources to finding a cure because they feel too small a percentage of the population suffer from it to make an effective drug profitable.