Out in Grayland, where the distinctive, red-vined cranberry bogs stretch for acre upon acre, stands a unique shake home with an inviting front porch. In the yard, a dilapidated and well used basketball hoop clings precariously to a weathered wooden pole. A Christmas tree sparkles from the living room window. This is the home of Evan Waara and his parents, Carl and Liisa. The Waaras, eager to share their mission of hope, also sparkle and beam.

You may not have heard of Evan Waara — yet. However, you may have heard of Cystic Fibrosis (CF). This story is about both and how Evan and his family are working to end an unnecessary evil.

A ruddy 15 year-old Ocosta High school freshman, Evan Waara, is making a name for himself in more ways than one. He was diagnosed with CF when he was 2 years old, but that doesn’t stop him from being active in an array of sports. He plays guard for Ocosta’s basketball team, splitting time between the junior varsity and the varsity, runs track and has participated in cross country, played baseball and even dabbles in golf. But he competes against another opponent, as well.

If you’re familiar with the effects of Cystic Fibrosis you might not think these activities are possible, but, while there is not yet a cure for CF, treatment techniques are getting better and improving the lives of those it touches. The rare, inherited disorder has several mutations, but typically can cause severe damage to the lungs, digestive system and other organs by affecting the cells that produce mucus, sweat and digestive juices. Normally thin and slippery, these secretions become sticky and thick; then, instead of acting as a lubricant, ducts and passageways, especially in the lungs and pancreas, become clogged. The absorption of fats and proteins are also hindered. The condition eventually leads to premature death, though great strides have been made in treatment leading to greater longevity.

“Evan takes 20 to 25 pills a day,” said his father. These mainly aid in digestion and help the pancreas function better. He also undergoes a daily lung massage, given by a vibrating vest that loosens the sticky secretions. Evan’s doctors and family also believe his aerobic physical activity is good for him.

“I’ve been lucky,” said the optimistic teen, who runs the 400 meter in track. “I just keep up with everything; I listen to my doctors and do what they tell me.”

“Many doctors and families would be amazed,” adds his father, “he runs the most grueling of cardio events.” Evan’s heart is not only strong; it is also full of giving and compassion, as shown by his acts of charitable volunteerism. In fact, almost immediately after Evan was diagnosed, the entire family turned its efforts to raising money for research to find a cure; the past 13 years they’ve initiated and participated in a variety of benefit events to help the Cystic Fibrosis Foundation.

“We’ve always — ever since his diagnosis — been met with optimism (for a cure),” said Evan’s mother, Liisa. “It’s always looking better and better.”

According to Evan, the family raises both funds and awareness, “just through a bunch of stuff” like a fundraising dinner, an annual coin drive through the elementary school where Liisa teaches, and they’ve always participated in Great Strides, a CF Foundation fundraising walk held each June. Evan first walked the event when he was 3 years old and each year Evan’s Dream Team alone raises twenty to $30,000 for the foundation.

“We keep raising money,” said Evan’s father who went to Washington, D.C., last spring as an advocate for CF. “They’re getting closer to a cure all the time.” While there, he spoke with Dr. William Skach, senior vice president of affairs with the CF Foundation, who said that he is “confident they will have a cure within the next 10 years.” Mr. Waara noted that researchers, though optimistic, generally couch their words with more caution. Meanwhile, the Waara family, he said, strives to “be the face of CF and bring awareness.”

Evan’s high-profile fundraising efforts and athleticism have allowed him to meet several professional athletes. “I’ve met, like, all the Seattle Mariners,” said young Waara, who’s hung out with them in their locker room. The Mariners take one of their few days off during the season to play in a golf tournament that raises money for the CF Foundation. Evan even spent his 10th birthday with former general manager Jack Zduriencik in his suite at a Mariners game.

The athletic teen also does well in school and is involved in Future Business Leaders of America and the Knowledge Bowl. So what does Evan have planned for the future? “I just want to go one step at a time — get through high school first,” he said. He added he will probably go to college — maybe UW where his grandfather went. He has no fears, but neither has he made any serious long-term plans — except to keep on keeping on and continue to do his best at all he does.

Whether on the court, the track, or the links Evan Waara is on guard and on point to bring an end to cystic fibrosis so that one day — hopefully soon — CF will stand for “Cure Found.”