Kickstarter film project, ALS patients face life-and-death deadlines

Ben Harris, with son Rawdan and wife Rebecca.

Time is running out for Jason Harris and his brother, Ben. Only 14 days remain in Jason Harris' Kickstarter effort to fund a documentary film around Lou Gehrig's disease patients taking science and the search for potential treatments into their own hands. The story centers on Ben Harris, who wasinstrumental in efforts to fill a mid-stage trial of an experimental treatment from Palo Alto's Neuraltus Pharmaceuticals Inc. Ben also was involved in a patient-led "biohacking" movement to find the active ingredient of Neuraltus' drug, called NP-001, and to treat themselves. It is more than a story about Lou Gehrig's disease, also known as amyotrophic lateral sclerosis or ALS. It is a story about the growing movement by patients to take matters into their own hands as they and their caregivers, doctors and drug companies become increasingly frustrated with what they see as the sloth-like process of getting life-saving or disease-altering drugs approved. It also is a story that gets to the heart of a major drug-development question: When is a small extension of a patient's life -- even just a few months -- not a regulatory or business model issue but a personal or ethical issue?