Cystic Fibrosis: Finding the Silver Lining

Every fall, Truman State University welcomes over a thousand incoming freshmen, all of whom have their own unique abilities, talents and dreams. Some are unsure what exactly they will be using those talents to accomplish at college, while others have a definite idea of what they want to do. Patrick McNickle identifies with the latter group.

McNickle hails from Gallatin, Missouri, and participated in the usual mixture of sports, clubs and activities in high school. But McNickle has another set of experiences that an average student has probably never seen. His brother Chris has cystic fibrosis, a rare, terminal genetic lung disease which causes mucus buildup in the internal organs and makes breathing difficult.

“They like to make the analogy that when someone has cystic fibrosis, it’s like they’re constantly breathing through a bendy straw,” said Patrick McNickle.

Chris McNickle, 3 years older than his brother, attempted to move out of the house and live independently, but the disease has made that difficult.

“[T]hat didn’t really work too well, because he came back at 5-foot-11, 21 years old, and he weighed 106 pounds when he returned home,” said Patrick McNickle. “So, the past couple years have been where we’ve really noticed changes in his lifestyle, his physique, but leading up to that point he’d been in and out of hospitals, doing yearly checkups and everything else like that.”

As Patrick McNickle talked about the hardship his brother has faced, his voice made it clear this was a somewhat painful subject, but one he had gone over many times before nonetheless. It is his affection for his brother that has spurred his involvement with cystic fibrosis activism from an early age.

“The CF involvement started when I was eight, because my brother was eleven when he was diagnosed,” said Patrick McNickle.

Great Strides is an annual Cystic Fibrosis Foundation fundraising event which includes walks all over the nation to raise funds to cure cystic fibrosis. Every year since he was 13 years old, Patrick McNickle has been on the planning committee of a cystic fibrosis awareness walk held in May by the Kansas City chapter of Great Strides.

Patrick McNickle’s involvement with Great Strides is part of the reason he is at Truman. Vertex Pharmaceuticals Inc. is a company on the forefront of cystic fibrosis research, producing various medicines and pneumatic vests used to assist with breathing. The company offers yearly All in for CF Scholarships to students who have distinguished themselves academically and through involvement in cystic fibrosis activism. Patrick McNickle’s freshman year at Truman will be supported by this $5,000 scholarship.

[T]he determination of All in for CF Scholarship recipients is remarkable,” wrote Jeffrey Leiden, chairman, president and chief executive officer of Vertex. “They are examples of the many families who inspire us in our relentless pursuit to discover and develop transformative CF medicines.”

“Personally, I think of the disease that [my brother] has as more of an opportunity for myself to help other people to learn more about the disease so they can help educate people, help these other families get through it, so that’s a big part of why I involve myself with the activism part of it,” Patrick McNickle said.

For more, pick up a copy of The Index Thursday, Aug. 23.