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For Profit Approach

Parents whose child is afflicted with a rare, often genetic, disease and want to do something to bring attention to the condition or encourage drug development for it typically establish a foundation. But, as the Wall Street Journal reports, a small portion of parents has instead been founding for-profit companies.

"Greed works better than fear or altruism," MIT's Andrew Lo, who develops business models for such groups, tells the Journal. "The amount of money needed to develop a single drug is so much more than what pure altruism can fund."

Ilan Ganot left his job at J.P. Morgan Chase to found Solid Ventures after his son Eytani was diagnosed with Duchenne muscular dystrophy. His company, which has raised some $17million, is focusing on a variety of approaches, including a handful of drugs and an exoskeleton suit.

But, the emotions of being the parent of a child who needs new treatments can collide with cold business decisions, the Journal notes. Ganot, it says, excuses himself from meetings when it starts to feel too personal and another executive takes over.

And the timetable may still be too slow for their children. Brad Margus, whose sons have ataxia-telangiectasia, has established both a foundation and a company to find an effective drug for the disease. Most A-T patients live to their mid-20s, but his sons are 24 and 25.

The Journal writes that Jarrett Margus meets his father to discuss his work, but he says, "I'm not sure it will be fast enough."