Here.Us.Now.

Rüdiger Poe's documentary focuses on Hugh and Chris Hempel, a California couple whose 8-year-old twins are slowly dying from Niemann-Pick Type C—a rare neurological affliction often referred to as childhood Alzheimer's. No cure exists for the disease, nor for thousands of other uncommon conditions that impact nearly one in 10 Americans. Indeed, of the 7,000 known rare diseases today, only 200 have drug treatments approved by the U.S. Food and Drug Administration. Writer-director Poe details how the Hempels aggressively researched potential treatments for their daughters—Chris Hempel determined that a drug called cyclodextrin would offer the best course of action—and then pushed doctors and pharmaceutical companies for help. Running concurrent to this riveting real-life story is an investigation into why medical research is so slow in finding breakthroughs for unusual disorders. Poe assigns much of the blame to the laborious tenure process for university-based researchers, which takes time and energy away from laboratory work in favor of trying to raise academic standing. Perhaps due to the input of pharmaceutical executives and representatives from the National Institutes of Health, the film makes no overt criticism of corporations or government agencies for dragging their respective feet (the initial lethargic response to the AIDS/HIV crisis in the 1980s was the most egregious contemporary example). Offering a compelling call to action on behalf of people with non-mainstream conditions in dire need of medical attention, this is highly recommended. Aud: C, P. (P. Hall)