ed money and meetings,” she says. “Researchers are not going to study a disease unless there’s money behind it to fund the research.” For the Topics, Wrubel may be their best hope. THE GLOBAL GENES PROJECT, an advocacy group, estimates 350 million people suffer from orphan dis- eases worldwide. Most rare

y are in no position to mount a quest. But then there’s Michele Wrubel, 49, a stay-at-home parent from Connecticut who has calpainopathy. For years, Wrubel has been a passionate crusader for a cure. Affluent and well connected, she doesn’t varnish the truth about what it has taken to make the medical ind

are in no position to mount a quest. But then there's Michele Wrubel, 49, a stay-at-home parent from Connecticut who has calpainopathy. For years, Wrubel has been a passionate crusader for a cure. Affluent and well connected, she doesn't varnish the truth about what it has taken to make the medical

th calpainopathy. There were no clinical procedures that would lead to a diagnosis. "It took a really long time and a very concerted effort," says Wrubel, who walks with canes, submitting to a wheelchair for long trips or when in crowded places. "If you don't know what you're looking for, they don't