Those with Duchenne Muscular Dystrophy will likely die well before they reach their mid-20s. Now, one young man and his father are focusing on prolonging lives until there's a cure.
Ryan Ballou suffers from a rare genetic disease passed from mother to son. It causes breathing and heart muscles to breakdown and fibrosis or scarring to develop. Ryan's dad Ty knows it will eventually kill his boy.
"Ryan will have lung failure and or.. he will have a heart attack," Ty Ballou told Action News.
But because of various medications, Ryan's damaged heart is still strong. Cardiologist Subha Ramen saw promise in the minimally scarred muscle.
"So, it made me wonder if it was possible to treat fibrosis at an early stage," Subha Raman. M.D., a professor of cardiovascular medicine at the Ohio State University Medical Center, told Iexplained.
Along with Ohio State University, researchers Jill Rafael-Fortney and Paul Jansen, Dr. 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," Rafael-Fortney,M.D., an associate professor of molecular and cellular Biochemistry, at the Ohio State University, said.
But there was no money to do that, so, Ty 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," Ty said.
Now Ballou Skies has its own triathlon team. Ty says with help from the athletes Ballou Skies has raised more than 70,000 dollars 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 Dr. Ramen says without that money there would be no research. Now that it is happening the team is seeing improvement in heart muscle structure and function. And they're surprised by the effects on skeletal muscles.
"We saw a doubling of muscle force, so the muscles in the limb and the diaphragm were twice as strong," Dr.Fortney said.
Results made possible by Ballou Skies that could someday prolong its co-founders life and others just like him. Clinical trials are expected to start in the next several months. Doctor Ramen says because both drugs are already available the FDA can use data from the clinical trials to add MD 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 go to ballouskies.com.
FOR MORE INFORMATION, PLEASE CONTACT:
Senior Manager, Public Affairs & Media Relations
Ohio State University Medical Center