WASHINGTON (AP) -- Every other week, 7-year-old twins Addison and Cassidy Hempel have an experimental medicine injected into their spines in hopes of battling a rare, fatal disease.
And it's their mom who made that possible.
From her home in Reno, Nev., Chris Hempel persuaded scientists to share their research and managed to get the government to sign off on her daughters' unusual experiment. Hempel says getting help to fight a rare disease shouldn't be so hard.
But it's a huge challenge to generate drug company interest in the expensive testing of medicines for diseases so rare - like her girls' Niemann-Pick Type C - that the market is only a few hundred or few thousand people a year.