Foundation Commissioned Emmy Award-Winning Filmmaker Rudy Poe to Chronicle Challenges in Medical System Facing a Family Battling a Fatal Rare Disease
LOS ANGELES, CA – September 19, 2012 – The Ewing Marion Kauffman Foundation (www.kauffman.org), the largest American foundation to focus on entrepreneurship, today announced that the documentary, “Here. Us. Now. — A Family’s Fight to Bring Medical Innovation Home,” will be shown at a private screening at Harmony Gold Theater in Los Angeles on Friday, September 28, 2012, at 7 p.m.
Attending the private screening will be key leaders in the biotechnology industry, prominent physicians, patients and families affected by rare and genetic diseases, celebrity supporters, television network and film studio executives, and key members of the media. Celebrity guests confirmed to attend include Aldis Hodge (“Leverage”), Annika Marks (“The Surrogate”), DJ Kid Fish, Edwin Hodge (“Red Dawn”), Katrina Parker (NBC’s “The Voice”), Micah Hauptman (“Parker”) and Nestor Serrano (“24”).
Directed by Emmy award-winning filmmaker Rudy Poe, “Here. Us. Now.” chronicles the story of how Hugh and Chris Hempel, parents with no medical backgrounds, use their entrepreneurial skills to find a breakthrough drug treatment for their eight year old identical twin daughters who are dying from a rare progressive neurological disease called Niemann Pick Type C. As the devastating effects of the disease begin to take hold, the Hempels enter a world of complex medical literature, complicated clinical trials and regulatory mazes where new drug discovery, invention and approval are slow and ineffective.
“We commissioned this film because despite unprecedented investment in medical research and development, new drug discovery and approval remains complex and the Hempel’s story illustrates the problems within the system,” said Lesa Mitchell, vice president, Kauffman Foundation. “We hope to encourage the creative instincts of entrepreneurs to connect with the disruptive force of patients, passionate parents, advocacy networks, reform-minded physicians, and biomedical scientists to accelerate the search for breakthrough treatments and cures for rare and genetic diseases.”
The Hempel family’s medical journey reveals the grim truth that “rare disease” is all too commonplace. It is estimated that rare diseases affect 30 million Americans (10% of the U.S. population) and 350 million people worldwide. Yet while nearly 1 in 10 Americans live with a rare disease, only 200 of the estimated 7,000 known rare diseases have FDA-approved drug treatments.
Numerous industry leaders are interviewed in the film including 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 for Parkinson’s Research; Susan Love, MD, president, Dr. Susan Love Research Foundation; Scott Johnson, entrepreneur, President, CEO and Founder, Myelin Repair Foundation; and many others.
“We are thrilled that the Kauffman Foundation has commissioned this film to focus on the major issues faced by patients and their families battling chronic and debilitating rare diseases,” said Nicole Boice, President of Global Genes | R.A.R.E. Project. “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.”
Guests attending the screening will enjoy a welcome reception with healthy gourmet appetizers prepared by celebrity chefs Craig and Paola Petrella of Two Peas, snacks donated by Pretzel Crisps and hydration powered by smartwater®. A Q&A session and dessert reception will follow the screening.
Interviews will also be available before the event and onsite at the event with Ewing Marion Kauffman Foundation executives, Hugh and Chris Hempel, film participants, Global Genes Project representatives, rare disease parent advocates and celebrity supporters.
About Ewing Marion Kauffman Foundation
The Ewing Marion Kauffman Foundation is a private, nonpartisan foundation that works with partners to advance entrepreneurship in America and improve the education of children and youth. Founded by late entrepreneur and philanthropist Ewing Marion Kauffman, the Foundation is based in Kansas City, Mo. For more information, visit www.kauffman.org, and follow the Foundation on www.twitter.com/kauffmanfdn and www.facebook.com/kauffmanfdn.
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