Researcher passes away after lifelong battle with cystic fibrosis

Josh Stokell after receiving his doctorate degree
Friday, June 12, 2015

Joshua Stokell, a UNC Charlotte post-doctoral fellow, died on Monday, June 8, as a result of complications arising from his lifelong battle with cystic fibrosis.

Stokell gained media attention recently based on the fact that he was using himself as a subject for his research into cystic fibrosis. His story was reported last month in the Charlotte Observer.

The Association of Biology Graduate Students at UNC Charlotte is collecting contributions to assist Stokell’s family with his final expenses. Checks can be made payable to ABGS with “Josh Memorial” as the memo and can be mailed to: Department of Biological Sciences, 257, Attention: ABGS, Woodward Hall, UNC Charlotte, Charlotte, NC 28223.

Stokell was born May 13, 1979, in New Port Richey, Fla., the son of Judy Stokell-Bailey and Thomas W. Stokell. He lived in Sweetser, Ind., and the Asheville, N.C., area before moving to Charlotte to pursue higher education.

He completed his doctorate in microbiology in 2013 and worked as a post-doctoral fellow with Todd Steck, a biological sciences professor who has been his mentor. Stokell dedicated his studies to cystic fibrosis and was the lead author on a recent article in the Journal of Clinical Microbiology, which describes an unusual, single-patient study and an important finding that may point to an immediate cause of cystic fibrosis exacerbations.

The study found sudden growth of a specific bacterium, Burkholderia multivorans, preceded periods of acute illness. While B. multivorans has been known as a common pathogen in the lungs of cystic fibrosis patients, it is far less abundant than another pathogen, Pseudomonas aeruginosa, whose populations did not show significant changes prior to the life-threatening episodes.

As Stokell was both a researcher and the study subject in this case, the research team gained unparalleled access to the subject’s life history and medical records, providing critical context for the findings. The study represented the most intensive sampling of a single cystic fibrosis patient to date.

Chronic diseases like cystic fibrosis are often daunting puzzles that require an extraordinary amount of research effort to understand—the long-term interaction between the human body’s dynamic systems and the disease can be extremely complex, even when there’s a relatively simple initiating cause, such as a genetic defect. Consequently, researchers studying such diseases need an extra amount of commitment and passion to struggle with the intricate complexities involved.

Todd Steck, Stokell’s mentor, offered these thoughts about Stokell:

“All of the facts about Josh’s academic career describe someone who was on track to become a successful academician, however, they don’t tell you the kind of person Josh was. What I can tell you is that Josh was easy to like. He was generous with his time and was a good listener. He didn’t yell or complain, he just smiled. It was as if he accepted each day as a gift that he wasn’t going to waste.”