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In the fall of 2010, as my brother was dying of colon cancer, I learned a terrifying secret. He also had Huntington's disease, a horrific brain disorder that is passed down in families.

Suddenly, even as I was losing my cherished sibling, my childhood soulmate, I was also grappling with my own possible death. Because Huntington's is purely genetic, I had a 50 percent chance of having the incurable disease. And if I carried the lethal gene, that meant my children could have it too.

There are no drugs that slow the progression of the disease. Eventually, if I did have Huntington's, I'd lose control of my muscles, stumble like a drunk, be unable to speak or feed myself, and possibly suffer dementia. It was like having a perfect storm of Alzheimer's, Parkinson's and Lou Gehrig's disease.

Before he got sick, my brother had been a fearless athlete, a tall, good-looking guy who barreled down the steepest ski slopes. When our kids were small, we often went skiing together, and I would stand at the bottom of the...