Hawks' Brown inspired by work with Cystic Fibrosis Foundation

He was the older brother of Josh Brown's best friend. A skinny kid with a heart as big as his thigh muscle.

All Jason McNerney wanted to do was play football for Foyil (Okla.) High School, but his size and his illness prevented it.

"At the time I didn't know much about cystic fibrosis — I just knew what Jason had," said Brown, the Seahawks' placekicker. "It was my first touch with the disease. I saw how it affected my friends."

With apologies to Texas A&M, McNerney was Foyil's 12th man. He was a team trainer. The loudest cheerleader on their sideline. He did everything he could to help Foyil win games.

For one play in practice, in his senior year, McNerney was told by the coach to put a helmet on and play with the starting defense. The coach called a run designed to go right at McNerney. Jason didn't make the tackle, but just seeing him on the field was an inspiration to the team.

"He was a trouper," said Brown, who played running back, safety, punted and kicked for Foyil. "He was one of the coolest guys in school. He didn't dwell on his illness. When he was sick, he was sick. When he wasn't, he lived his life as full as he could."

Brown's sister, Lauren, is nanny to a 3 ½-year-old girl, Hannah Hoffman, who has cystic fibrosis. Hannah is the best friend of Brown's niece and nephew, and Brown considers her part of the family

"That's what kind of made it personal," said Brown, who carries pictures of Hannah in his wallet. "It just seems like there've been all these kids with CF who have been in my life and are very important to people who are important to me. Because of them, I've gradually been learning more about the disease. I'm trying to do something that indirectly might benefit their lives. So one day, maybe, my niece and nephew won't lose their friend."

Brown was part of a celebration on Sunday. He was the leader of the Cystic Fibrosis Foundation's "Great Strides for Cystic Fibrosis," a 3-mile walk that started at the Seattle Center.

And Brown isn't just the foundation's figurehead, not some one-day wonder who shows up, signs a few autographs, poses for pictures, distractedly walks the course, then bails.

He contacted the foundation last August and said he wanted to help.

He makes fundraising calls. He makes speeches. Last season, he started his "Good For Three Program," in which sponsors contributed $300 for every field goal he made.

For Sunday's walk, he rented a stretch Hummer and brought a walking party of about 16 friends from his church in Kirkland. Wearing blue T-shirts, they called themselves "Renn's Raiders," after one of their friends, 16-year-old Renn Jobb, who is living with CF.

Teams of people walked together wearing T-shirts that had prints of pictures of family members and friends who were either lost to CF or were living with the disease. A total of 950 walkers raised $320,000.

The family of Sadie Ellis walked for their daughter, who in her last days, made her parents promise they would do this walk and raise money in her memory. She told her parents she didn't want to be forgotten.

Cystic fibrosis is a genetic disease affecting approximately 30,000 children and adults in the United States. A defective gene causes the body to produce abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. The disease also can affect the pancreas and liver.

Recent research is encouraging. The median survival age has risen by more than four years, to 36.8, in the past five years. A new drug is close to gaining approval from the Food and Drug Administration.

More kids are growing into adults. More adults are able to realize their dreams.

"They're doing things they weren't capable of doing 10 years ago," Brown said. "And they're succeeding at them. We have kids now who are running track, playing tennis and basketball and doing well at them."

I've been fortunate enough to know many kids with cystic fibrosis during visits to Children's Hospital, and there is an almost addictive, universal spirit about them. They know what they have. They understand their odds, but there is almost no self-pity.

I became especially close to a girl from Hoquiam named Shay Youngblood. Shay was smart, strong, a competitive swimmer, a chronic partier, an absolute live wire. She died in her 20s, but she lived vibrantly practically every moment of her life.

"You would never know there's anything wrong with these kids," Brown said, sitting on the lawn at the Mural Amphitheater after the walk. "For the most part, they're just trying to live their lives and trying to overcome what's holding them back."

Like Jason McNerney and Renn Jobb, like Shay Youngblood and Sadie Ellis, they've been teaching the rest of us important lessons just by living their lives.

Steve Kelley: 206-464-2176 or skelley@seattletimes.com