Friday, September 28, 2012
7 p.m. - Reception
8 p.m. - Screening followed by program
9:30 p.m. - Dessert Reception
Harmony Gold Preview House
7655 West Sunset Blvd, Los Angeles, CA 90046
Chris and Hugh Hempel are in the fight of their lives. Their twin daughters, Addison and Cassidy, have been diagnosed with Niemann-Pick Type C, a rare and incurable 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.
Here. Us. Now. chronicles one family’s fight to bring medical innovation home, but 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 cures. It’s a broken system
moving at a tedious pace, and it leaves heart-rending personal stories in its wake.
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