On Friday, September 28, 2012 , the Global Genes Project will hold a screening of the documentary Here. Us. Now. at 7:oo pm at the Harmony Gold Preview House in Los Angeles. A limited number of seats will be made available for this private screening. Tickets are available here.
Here. Us. Now. has been commissioned by the Ewing Marion Kauffman Foundation and chronicles the story of Chris and Hugh Hempel and their identical twin daughters, Addison and Cassidy.
Addison and Cassidy have been diagnosed with Niemann-Pick Type C, a rare 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.
Here.Us.Now. is a story about 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.