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A Push to spur more drugs for deadly rare diseases

LAURAN NEERGAARD, AP Medical Writer
Cassidy Hempel, 6, waves at hospital staff with the help of her mother Chris at the Children’s Hospital and Research Center in Oakland, Calif., Friday, March 18, 2011. Cassidy and twin sister Addison are receiving alternative treatment for Niemann Pick Type C disease, a rare disorder where harmful amounts of cholesterol accumulates in vital organs. Every other week, 7-year-old twins Addison and Cassidy Hempel have an experimental medicine injected into their spines in hopes of battling a fatal neurologic disease. It’s not a drug company study _ their mother won a government OK for the unusual experiment. Photo: Marcio Jose Sanchez / AP

Chris Hempel, at right, comforts her twin daughters Cassidy, 6, center left, and Addison as their grandmother Helen Hempel, at left, looks on at the Children’s Hospital and Research Center in Oakland, Calif., Friday, March 18, 2011. The Hempel twins are receiving alternative treatment for Niemann Pick Type C disease, a rare disorder where harmful amounts of cholesterol accumulates in vital organs. Every other week, 7-year-old twins Addison and Cassidy Hempel have an experimental medicine injected into their spines in hopes of battling a fatal neurologic disease. It’s not a drug company study _ their mother won a government OK for the unusual experiment. Photo: Marcio Jose Sanchez / AP

To read the entire article and hear about this amazing story please click on the link below!
Read more: https://www.seattlepi.com/news/article/Push-to-spur-more-drugs-for-deadly-rare-diseases-1351584.php#ixzz1Ka66cy1H

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