When Mayo Clinic doctors couldn’t figure out what was causing Jill’s muscular dystrophy and other symptoms, she began a decades-long research project, even though she isn’t a doctor. Along the way, she saved her father’s life, connected with an Olympic medalist, helped a research team in Italy discover the genetic mutation behind her disorder, saved the Olympic medalist’s life, and
had a family. It’s an amazing story of partnership between patients and researchers and how the access to information and ability to connect can lead to important discoveries. At the same time, it sounds notes of cautions about the discoveries that may be left behind when experts dismiss the great questions of brilliant, but uncredentialled, people.