By Rudy Poe
Here.Us.Now. chronicles one family's determined fight to transform the medical research system in order to speed drug discoveries for treating chronic and debilitating rare diseases, which are more commonplace than is widely known.
Directed by Emmy award-winning filmmaker Rudy Poe, the film follows the story of Hugh and Chris Hempel, whose twin eight-year old daughters are dying from a rare progressive neurological disease called Niemann Pick Type C, with no known cure. Despite their lack of medical background, the Hempels use their entrepreneurial skills to seek a breakthrough drug treatment. As the devastating effects of the disease begin to take hold, the Hempels enter a complex and challenging world of medical literature, clinical trials and regulatory mazes, where new drug discoveries and approval are slow and often ineffective.
The Hempel family's journey also reveals the grim truth that "rare diseases" are actually widespread -- affecting 30 million Americans, nearly 1 in 10, and 350 million people worldwide. Yet, only 200 of the estimated 7,000 known rare diseases have FDA-approved drug treatments.
Here.Us.Now. advocates for a new model that accelerates the search for medical breakthroughs. The film encourages creative entrepreneurs to connect with patients, parents, advocacy networks, reform-minded physicians, and scientists to develop a better approach.
Industry leaders featured in the film include: Chris Austin, MD, director of the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health; Debi Brooks, co-founder, The Michael J. Fox Foundation; Susan Love, MD, president, Dr. Susan Love Research Foundation; and Scott Johnson, President, CEO and Founder, Myelin Repair Foundation.
Reviews
~ "Beautiful, eloquent, and thoughtful¡ The current way we do research¡ is too slow and outdated. This film will hopefully inspire thoughtful discussion." - Rare Disease Report
~ "With little drug development happening in the rare disease arena, it's going to take more entrepreneurial focused parents like the Hempels to step in and get directly involved in advancing drug treatments to save their loved ones." - Nicole Boice, President, Global Genes, R.A.R.E
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