Steve Ascher and Jeanne Jordan’s documentary “So Much So Fast” profiles an extraordinary family facing an extraordinary crisis. Stephen Heywood, a 29-year-old Boston-area home designer/builder, is diagnosed with ALS (also known as Lou Gerhig’s disease). ALS is categorized as a so-called orphan disease – it affects such a relatively small number of people that the drug companies cannot be bothered to sink money into finding curative treatments. Enter Jamie Heywood, Stephen’s older brother, who launches the ALS Therapy Development Foundation to fill that void. Jamie’s efforts create controversy in the staid world of neuroscience research, given his penchant for generating publicity and pursuing medical leads without going through the standard peer-review process.
Surrounding their siblings are their parents, their youngest brother Ben, their respective wives and young children, and a community of friends and supporters joined together to make headway in the fight against ALS. It is a noble effort, to be certain, but time is clearly not their ally as the disease painfully weakens the once-vibrant and athletic Stephen.
Shot over a five-year period, “So Much So Fast” is particularly heartbreaking as it details Stephen’s physical deterioration – his intellect and spirit do not deteriorate in the process. His determination to press on with his life (including becoming a father and supervising the construction of a new home) is achieved by making certain accommodations (a motorized wheelchairs, which allows him to make rapid 360-degree turns, replaces his favored Harley-Davidsons). The Heywood family also makes sure he maintains a regular life – he is included in all family trips, including a journey to the Acropolis in Greece (Stephen is carried in a regular wheelchair up the ancient steps to the top of that monument).
The film also portrays a couple of less-than-flattering aspects of the story, particularly how Jamie’s foundation (which began in his parent’s basement) grew too quickly and became so bogged down with internal bickering that an outside consultant was needed to come to play referee. However, the sudden growth of the foundation from basement operation to multi-million-dollar research lab isn’t entirely explained (the movie shows a restaurant fundraiser with Jamie’s wife performing a bellydance routine, but I suspect there was bit more to the fundraising push than a night of pasta and navel wiggling).
Overall, “So Much So Fast” is a glowing testament to family bonds and the will to survive. Only those with stone hearts will be unmoved by this remarkable production.