Young Investigator Research Grant produces exciting and award winning results for rare disease patients

2018 Young Investigator Draft grant recipient Aimee Layton (left).

Two years ago, when Uplifting Athletes handed out rare disease research grants at its first Young Investigator Draft presented by CSL Behring, Dr. Aimee Layton from Columbia University was one of the recipients in the first draft class.

In the nearly 18 months since the execution of that rare disease research grant, Dr. Layton used a portion of this early stage research funding to institute a fresh approach to an already existing program for extremely sick patients battling Cystic Fibrosis (CF) – a rare genetic disorder that affects multiple organ systems.

Dr. Layton came up with an idea to use an app on your phone to encourage patients to participate in an eight week exercise program. The main focus was a new take on a pre-lung transplant pulmonary program that increased the patient’s chances of a stronger recovery following the transplant.

“Of the patients who completed the study, one told her transplant doctor that the work ‘changed my life.’ He hugged me when he told me this,” Dr. Layton said. “So thank you to Uplifting Athletes, because this couldn’t have been done without the Young Investigator Draft Grant.

“These patients are very sick so they can’t go to a gym like most people but they could use the app at home. What gave me the idea to use an app was patients don’t want to be treated like they are sick. They just want to be treated like everyone else. In the medical field we sometimes forget to not always focus on the disease, but instead focus on the people.”

Once patients started signing up for the new pulmonary program, something unusual started happening. Not only were most patients completing the eight-week exercise program, some were even signing up to pay for the app on their own so they could continue.

“It’s huge that they want to exercise and help themselves. It’s hard to convince them to do this because they are afraid to exercise,” Dr. Layton said. “The instructors on the app are very motivating and it motivates the patients. Exercise has to be fun because, by nature, it’s painful. And this made it entertaining for them.”

All the patients were not finished with the program, and a few were still in the pipeline to get started, but Dr. Layton and her team turned the scientific data gathered from the study over to Andrew Irwin, one of the medical students in the Columbia lab. He was the first author for the research side of this new approach to a program that already existed.

Irwin, a second-year medical student who studied kinesiology as an undergraduate, spent three years as a personal trainer and obtained a masters degree in Global Health, assembled all the scientific research at his disposal for a presentation at the American College of Sports Medicine (ACSM) regional chapter in New York as part of the research competition.

Andrew Irwin (left) and Dr. Aimee Layton at the American College of Sports Medicine (ASCM) regional chapter research competition.

The data used for the competition was still preliminary as the program is still not complete. So Dr. Layton made sure expectations were tempered for how the study would fair in a competitive research environment.

Irwin presented his study at the regional conference and the judges were impressed enough with preliminary data to award the Columbia University study first place.

“I didn’t have too high of hopes at the regional level because all the patients had not finished the new program, so our report was only based on only preliminary results,” Dr. Layton said. “The judges went crazy for it, though. So we have a few more patients we need to get through the program in the next two months and then we can complete this study and go from there. This is all very exciting for everyone involved.”

Irwin will gather all the remaining data possible to present a completed study at the ACSM’s National Conference President’s Cup research competition in May.

Helping rare disease patients with CF increase their chances of a recovery after their lung transplant is always the goal.  Finding a new approach to an already existing program that is motivating these patients to complete, and in some cases continue on their own, is pivotal. Plus winning a competition based on the initial scientific data from the program shows the potential of a research team with the funding to try something different. 

If you would like to meet the 2020 Young Investigator Draft Class, Uplifting Athletes will host its 3rd Annual Young Investigator Draft presented by CSL Behring on Saturday, March 7th at Lincoln Financial Field, home of the Philadelphia Eagles. To attend the 2020 Young Investigator Draft, purchase your tickets here.

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