I have been involved with Huntington’s disease long enough that I’m now beginning to see the children, even grandchildren, of my original patients. It’s a sad reminder of a cruel aspect of HD: there’s a 50/50 chance of affected parents passing the disease on to their children.

It would be understandable to be overcome with doom and gloom, but then I come across beacons of hope: a young man named B.J. Viau is one of them.

B.J. was only 10 when his mother was diagnosed with HD. He watched her slowly deteriorate, going from someone who could run eight miles a day to being confined to a wheelchair. I know things were difficult for B.J. and his family, and one would think that they would have been consumed by fear and grief.

Instead, B.J. decided to shoot hoops. At 10, he started the Twin Cities Hoopathon, a benefit for the Huntington’s Disease Society of America. Now in its 15^th year, it has raised nearly $1 million for HD.

I invited B.J. to the World Congress on Huntington’s Disease in 2009 to share his story. The audience of physicians, researchers, and caregivers was blown away by his positive, get-involved message. So much so that a pharmaceutical company—the only one to manufacture a drug labeled for HD—hired him pretty much, right on the spot! And while at the congress, B.J. met other young people like himself from around the globe. Together, they have launched a new charity, the Huntington’s Disease Youth Organization, or HDYO.

HD takes away, but sometimes, in unexpected ways, it gives, too. B.J. is proof.