Here. Us. Now. is a documentary film commissioned by the Ewing Marion Kauffman Foundation, the largest American foundation to focus on entrepreneurship. The film chronicles one family’s fight to bring medical innovation home.
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Chris and Hugh Hempel are in the fight of their lives. Their identical twin daughters, Addison and Cassidy, have been diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease that causes progressive neurological deterioration. As the devastating effects of the disease begin to take hold, the Hempels enter a world of complex medical literature, complicated clinical trials, and cumbersome regulatory mazes where new drug discovery, invention, and approval are slow and ineffective.
The Hempels’ story reveals the grim truth that rare disease is all too commonplace. Despite unprecedented investment in medical research and development, there are thousands of known rare diseases and disorders without treatments and cures. It’s a broken system moving at a tedious pace, and it leaves heart-rending personal stories in its wake.