NEWCASTLE, Wash. -- The routine of a Major League Baseball season is grinding and at times monotonous, but it pales in comparison to what those living with cystic fibrosis have to go through every day.
Take Evan Waara, 12, who was diagnosed with the chronic disease in 2003.
Every day, Waara takes about 25 pills. When he wakes up, he puts on a vest that shakes free the mucus built up in his lungs while breathing in a saltwater solution to thin it. When he goes to bed, he repeats the process and takes an inhaled medication. Every day.
On Thursday, Waara joined a handful of Mariners players, coaches, and personnel, manager Lloyd McClendon, general manager Jack Zduriencik and a group of donors at the Golf Club at Newcastle for the 29th Annual Mariners Golf Tournament to benefit the Cystic Fibrosis Foundation.
Last year, the tournament raised in the neighborhood of $220,000, which went to funding research for cystic fibrosis treatments. They expect to bring in about the same amount this year, according to main tournament sponsor Harley Franco, CEO of Harley Marine Services. Since the tournament started in 1986 at Bear Creek Country Club in Woodinville, Wash., it's raised about $5.11 million.
Thursday marked Waara's ninth year attending the scramble-format tournament. Afterward, silent and live auctions offering sports memorabilia were held, followed by dinner.
"This whole tournament and all the players coming out on their only off-day means so much to me," Waara said.
"It's awesome. Normally we'd be just sitting at home doing nothing, but instead today we get a chance to come out here and have fun playing golf for a good cause. I think that's a cool thing to do," Ackley said.
Furbush didn't know much about cystic fibrosis, a disease that currently affects approximately 30,000 Americans, until he got to college, when he heard that "a friend of a friend" had it. This was his first year co-hosting the event.
"This is great to be able to come out here and give back to such an important foundation," Furbush said. "Not really many people know about it and how far it's come along and the advancement and all the technology extending these young kids' lives. It's really special to be a part of."
There's nothing a person can do to prevent getting cystic fibrosis -- it stems from an inherited genetic mutation that causes mucus to build up in the lungs, which leads to infections. Those who have it typically experience digestive problems and have a life expectancy of about 40, but more effective treatments are emerging.
"We're knocking on the door for a cure," said Franco.
Consider: When Evan Waara was diagnosed at the age of 2, the life expectancy for those with cystic fibrosis was "late 20s, early 30s," his dad, Carl Waara said.
Earlier this week, Vertex Pharmaceuticals announced the results of a clinical trial that combined two of its drugs on cystic fibrosis patients. It revealed that, by taking the medicine, about half of those with the disease can improve lung function and reduce the risk of pulmonary flare-ups, improving their chances of leading a healthy, full, normal life.
It still needs FDA approval, but Carl Waara said Evan Waara would qualify for treatment.
"There's a pill that came on the market last year that helps a very small group of kids with CF, and there's a new pill that's coming out that's in the clinical trials right now that would allow Evan's genetic mutation to be impacted by the pill that was out last year," said Carl Waara. "He would have to take the two pills, but it's within months of being available. In theory, it can reverse all the symptoms."
As the tournament participants gathered on Newcastle's putting green before heading to their designated tee box for a shotgun start, Evan Waara took the microphone from Mariners play-by-play man Rick Rizzs and announced that he had to leave early because his Little League team was playing that night in an All-Star tournament in Tenino, Wash.
Said Waara: "[I'll] have stories to tell all my friends about meeting all the coaches and players."
Adam Lewis is an associate reporter for MLB.com. This story was not subject to the approval of Major League Baseball or its clubs.Less