Doing it for Bernie

As a child growing up, cystic fibrosis was a disease Mary Ann Johnson's family had to deal with. While she was a child, she lost two of her siblings to the disease. As an adult, she lost a third. Now, she is trying to help raise money and awareness about the disease.

Johnson is the co-chair for tomorrow's Great Strides Walk in Anchorage. She has dedicated herself to helping others, using her experiences as a way to educate and encourage other cystic fibrosis patients and families.

"They are making a lot of headway with research. The life expectancy has gone up, and the quality of life of those years is improving," Johnson said. "People with CF are growing up, getting married and having kids. They are plugging away with research. With the advances in technology, I hope I see a cure."

Johnson is one of nine siblings in her family. When she was seven, her sister Teresa, a year younger, passed away from CF after a prolonged illness. "She was always sick, but at that age, we didn't really understand anything. She died in her sleep and my mom pulled us together and told us she went to Heaven, but we didn't really understand."

Nine years later, Johnson's brother, Ben, died of CF. Johnson was 16, and it had a bigger impact on her life.

"It was a long, drawn-out thing, and it was tough to just pick up your life and go back to school after that," Johnson said. "I never had someone to talk to about it."

Three years ago, Johnson's youngest brother, Bernie, passed away. It was Bernie's death that hit Johnson the hardest.

"He was an athlete. He played baseball and basketball until high school and then took up golf. He golfed for a semester in college before he couldn't do it anymore," Johnson said. "When he died, it really affected me, because I was a parent and finally knew what my parents were going through."

Johnson got involved with cystic fibrosis patients and foundations. She said the thing that sticks out in her mind the most about young children with CF is their attitude.

"They are incredibly positive, each and every one," Johnson said. "They have these bubbly personalities. They are kids you want to take home with you. I've become a better person with each child I've met with CF."

Johnson has been tested and knows she isn't a carrier of the CF gene. But her dedication remains. She is co-chairing tomorrow's Great Strides Walk, which begins at 9 a.m. at Goose Lake Park in Anchorage. The event promises to have a Valley feel, as Johnson said more than half of the walkers are from here.

"I'd love to organize a Valley walk, but it would probably be the end of the Anchorage walk," Johnson said. "I wouldn't feel good about that."

Johnson is putting together Bernie's Dream Team. Last year, almost 40 walkers took part on the team, and 200 walkers took part in the entire event. This year, Johnson is hoping for 225 participants, and she is shooting for $42,000 in donations.

"People can come out on the day of the event or call me or e-mail me about donations," Johnson said. "There is a raffle drawing for a trip for two to Hawaii and we're going to have fun."

For more information, interested people can contact Johnson at 746-0955 or mahji@gci.net.