Man suffering rare form of Muscular Dystrophy fights to fund cur - ABC 12 – WJRT – Flint, MI

Man suffering rare form of Muscular Dystrophy fights to fund cure

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FLINT (WJRT) -

(11/18/11) - A man with a rare form of muscular dystrophy is racing against time to save his own life.

Ryan Ballou has Duchenne Muscular Dystrophy. He is now part of a ground breaking study to find a cure, research he and his father are working tirelessly to fund.

Duchenne's is a rare genetic disease passed from mother to son. It causes breathing and heart muscles to break down. It also causes fibrosis, or scarring, to develop.

Ty Ballou knows it will eventually kill his son. "Ryan will have lung failure and or he will have a heart attack."

But, because of various medications, Ryan's damaged heart is still strong. Cardiologist Subha Ramen, of Ohio State University Medical Center, saw promise in the minimally scarred muscle. "So, it made me wonder if it was possible to treat fibrosis at an early stage."

Along with Ohio State University researchers Jill Rafael-Fortney and Paul Jansen, Ramen wanted to test a combination of the common heart failure drugs spironolactone and lisinopril.

"Both of the drugs are known to be anti-fibrotic or prevent scarring," Ramen said. But there was no money to conduct tests. So, Ty says, he and Ryan created Ballou Skies. "I said 'to hell with it. Whatever you need, you get the kids, we're gonna get the money.' I started doing these crazy triathlons."

Now, Ballou Skies has its own tri-athlon team. Ty says, with help from the athletes, the organization has raised more than $70,000 for the research effort.

"It's nice that we're actually kind of helping speed along the research," Ryan said.

Wearing a Ballou Skies bracelet for inspiration, Ramen says, without that money there would be no research. Now that it is happening, the team is seeing improvement in both heart muscle structure and function.

Rafael-Fortney is surprised by the drugs' effects on skeletal muscles. "We saw a doubling of muscle force, so the muscles in the limb and the diaphragm were twice as strong."

Results made possible by Ballou Skies, that could some day prolong its co-founders life and others just like him.

Clinical trials are expected to start in the next several months. Both drugs are already available, but now, the FDA can use data from these new clinical trials to add Muscular Dystrophy treatment to their existing approved uses.

Ty says he needs to raise more than $200,000 to help fund the work. If you'd like to donate to the cause, visit  www.ballouskies.com.

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