Waves of support to cure cystic fibrosis

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Inhale, exhale.

It’s the most instinctive action, and yet for 70,000 people in the world, taking a breath is not natural or easy. It’s a constant struggle to force oxygen into lungs clogged by mucus.

This is the reality for many patients affected by cystic fibrosis, and working to change that is the reason for events like Pipeline to a Cure, held in Wilmington Saturday, Aug. 2.

The purpose of Pipeline to a Cure, now in its third year, is to raise funds and awareness for cystic fibrosis as well as to highlight the connection between surfing and CF.

The surfing community has thrown its support behind the Cystic Fibrosis Foundation in light of recent discoveries showing that CF patients who surfed had healthier lungs than patients who did not. After a clinical trial, doctors in Australia found the salty spray from the ocean helped clear mucus from the lungs.

Many prominent athletes in the surfing community have involved themselves in Pipeline to a Cure. Legendary big wave surfer and paddleboarder Dave Kalama attended the 2014 event as surf ambassador and honoree.

Kalama first became involved with Pipeline to a Cure in California as a favor to his godmother, Judy Burlingham, who served as chair for the event. That was where he met CF patient and surfer, Emily Haager.

“I spent the day with her, seeing her daily routine and the regimen of treatments, all the pills, and it was pretty intense,” Kalama said. “It put a face to it, made it personal.”

Later, while visiting the children’s ward at Massachusetts General Hospital, he saw firsthand the benefits, both physical and mental, that CF patients experienced after surfing.

“It’s a little bit of a reprieve from what they’re facing constantly every day,” Kalama said. “Anything that draws you away from the routine, it’s a nice break for your mind as well as your body. And they’re not just having a bad day. … They’re fighting for their lives.”

Saturday afternoon, Kalama took CF patient and Wilmington resident Scott Johnson paddleboarding in the Intracoastal Waterway. Although he had to undergo a double lung transplant in 2001, Johnson said that part of the reason he was able to survive for so long was his frequent surfing sessions.

Pipeline to a Cure also honored CF patient Howell Graham and invited him to share his story with guests during the evening gala at the Country Club of Landfall. Graham was diagnosed with cystic fibrosis at age 2, at which time his parents were told his life expectancy was seven years.

He is now 52.

Howell’s mother, Nan Graham, was by her son’s side during the gala, reflecting on his journey and the hardships faced by both her son and his family.

“It’s hard, really hard, to have a child with CF,” Graham said. “Not being able to breathe is a terrible thing. I’m eternally grateful to have him.”

Howell Graham’s health and quality of life improved drastically in 1990, the year he underwent a double lung transplant. It was an extreme measure taken by CF patients during that time, before the invention of modern drugs such as Kalydeco, which will soon be able to treat 55 percent of the 1,800 mutations of CF.

Event chair Kay James said the closer the Cystic Fibrosis Foundation gets to the ultimate goal of finding a cure, the more important events like Pipeline to a Cure become, as each one is capable of raising more than $115,000 for the foundation. These events are the only source of funding for research of treatments that could ensure patients not only a normal life expectancy, but also an infinitely better quality of life.

“CF patients are the most courageous people I know,” James said. “They fight to just have a normal day. Events like this are extremely important. Everyone who is attending and supporting the event is getting us closer to saving lives — our honorees’ lives, our ambassadors’ lives, and those who we haven’t even met yet.”

email emmy@luminanews.com

 

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