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 onwww.twitter.com/kauffmanfdn and www.facebook.com/kauffmanfdn.