Hayes empowered by research participants, colleagues to do things bigger than himself

Thursday, March 03, 2016


Terry Hayes
Hayes, a research assistant at the UI HDSA COE since August, says he wants to do whatever he can within the research world and as an advocate to help those in the HD community. (photo by Owen Wade)

By Sean Thompson

Usually, a broken leg leads to a cast, probably some crutches, rehabilitation, and eventually, a healed leg. For Terry Hayes, breaking his leg led him to becoming a research assistant at the UI HDSA Center of Excellence.

Eventually. It eventually led him to coordinating clinical trials to test new treatments for Huntington disease. Here’s how.

One day during his freshman year in high school, Hayes was playing basketball. When he landed from a jump, his lower leg fractured in three places. This led to time spent with an orthopedic surgery team. He was impressed by both the science of health care and the way the medical professionals worked as a team to help him recover from his injury. The experience inspired Hayes to pursue a future career in the health sciences, providing career direction he had been lacking.

“From that point, it dawned on me that I wanted to help people in that capacity,” Hayes said. “I had the people skills and there’s something rewarding about helping people in that way, promoting health and well-being.”

Hayes went on to attend Iowa State University in Ames for a change of pace from St. Louis and Cedar Rapids where he grew up. He started off studying biology, but did not find fixating on microorganisms to be very stimulating. Being more of a people person, Hayes gravitated toward kinesiology, which he describes as the study of motion as it pertains to health and human physiology. He got involved in conducting research at the undergraduate level, looking at physical therapy methods for improving gait in older individuals living in nursing homes.

Hayes furthered his experience helping older people while working as a nursing assistant at a nursing home for two years during college. Assisting patients and being able to better their quality of life further solidified his desire to have that kind of direct impact on people’s lives.

“It was very rewarding to see the fruits of my labor,” Hayes said. “Working with older people, they appreciated you being there and taking care of them when their family couldn’t be there all the time. They bonded with you.”

Working in a nursing home was also Hayes’ first exposure to people facing similar types of difficulties and symptoms experienced by those with Huntington disease. He said working with people affected by Parkinson disease and Alzheimer disease contributed to his interest in working at an HD center. But it was also the opportunity to interact with research participants, help them through their visit, answer their questions and talk to them about their lives that made him want to be a research assistant. Hayes didn’t want to be stuck in a windowless room in a basement somewhere doing bench research.

Hayes is currently coordinating the SIGNAL study, which is testing a treatment that would, if effective, slow the progression of brain inflammation caused by HD. The study looks at the safety, tolerability and effectiveness of a drug called VX15, which is the first of its kind to be studied in HD. The drug is a monoclonal antibody that mimics the antibodies one’s immune system naturally produces. If effective, the antibody would bind to and neutralize a molecule that causes brain inflammation. It is enthralling, Hayes says, to work on a trial of a drug that not only targets symptoms, but aims to delay or prevent those symptoms from happening.

“The idea that you can help a patient and their family have a higher quality of life and a longer and more fulfilled life, according to their standards, is something that’s very exciting for me to be a part of,” Hayes said.

The people who Hayes enjoys interacting with so much, the research participants, have provided an eye-opening experience so far, Hayes said.

“They are positive and they are optimistic and very eager to get involved with the things we have going on here, which I find exciting,” Hayes said. “It empowers me to want to do more than what I’m doing just to see that.”

Hayes also feels empowered by his colleagues and the atmosphere of collaboration and cohesion at the UI HDSA Center of Excellence. Everyone from the physicians to the researchers to those behind the scenes are working toward the same goal of providing excellent care and research opportunities for the HD community, he says.

On a day-to-day basis, Hayes wants to contribute to that effort. He has set meaningful and achievable goals for what he wants to have accomplished when he looks back on a completed day at work.

“If I’ve helped even a little bit with improving something within the HD community,” Hayes said, “or even just becoming a better person in general and feeling like I’ve accomplished something that’s bigger than myself.”

That mindset and work ethic comes from his parents, whom Hayes credits with making him the person he is today through their own hard work and the example they set for him growing up.

“I see the value in working hard and getting where I want to be,” Hayes said, “and not settling for anything less than your best. My parents have influenced me to go the extra mile and take the initiative to get things done and be a better person for society in general.”