Family running to fight Huntington's disease - San Diego, California News Station - KFMB Channel 8 - cbs8.com

Family running to fight Huntington's disease

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SAN DIEGO (CBS 8) - It's sometimes called the devil of all diseases, but what do you know about Huntington's disease?

There's a good chance you don't know much about the fatal neurological disorder that has no cure and no treatment. One San Diego man and his daughter are going the extra mile to change all of that.

Before they share their story, Chargers PR Director Bill Johnston and his daughter Hayley want to make sure they're not the story. The story is the battle against Huntington's Disease.

"Huntington's disease is a neurological disorder. It's a fatal brain disease in which brain cells die, and they haven't figured out a way to stop the progression of the disease," Bill said.

Bill's wife Ramona was diagnosed with HD more than a decade ago. She requires full-time care now, and has lost most of her motor and cognitive abilities.

"There's no treatment, no cure, and that's what we're working for," Bill said.

HD is a genetic disorder, and there's a 50 percent chance Hayley has it, but she's not ready to be tested.

I think down the line, maybe when there are important decisions to be made -- marriage, children. That may obviously change the way I feel," Hayley said.

That all leads to their story. This weekend they're running in their fifth Rock and Roll San Diego Marathon to raise money for the Huntington's Disease Society of America.

"Just because I couldn't find a way to help her, I couldn't go in a lab and discover a cure for this disease, but I could try to raise money to get people who could find a cure for this disease," Bill said.

Bill ran alone at first, with Hayley joining her senior year in college.

I would come home like every other weekend so we could do our training runs together," Hayley said.

"I think it's definitely brought us closer together."

This year for the first time, they're bringing Ramona along.

"I'm so excited she can come with us and experience it with us. It's going to be incredible," Hayley said.

All they hope is that their story will help you think of the story, to build awareness and find a cure for Huntington's Disease.

Hayley's brother did take the test for HD, and it was negative.

The Johnstons would love for you to learn more about Huntington's Disease, and maybe even consider donating to the cause.

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