In the beginning, Chris Hempel noticed the clumsiness. Her girls tripped over toys on the floor. Their grandfather said he couldn't teach them to pedal their tricycles. … The Hempels learned of people who called themselves citizen-scientists. Many shared research papers and their day-to-day experience. Some talked of their willingness to try any promising drug. Others sought a role as equal partners with researchers. Scientists, while sympathetic, generally believe their work should be left to experts. Families are encouraged to raise money if they want to help, but the traditional view is that amateurs can't shape research or find cures. The Hempels found a maddening gap between the search for scientific knowledge and the search for treatments (Amy Docker Marcus, 11/2013).
Read more here ... Longer looks: Parents' crusade on rare diseases; fighting obesity; experts' view of alternative medicine
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