As March Madness sweeps the nation and college basketball takes center stage, a former coach鈥檚 journey off the court is proving just as inspiring as any Cinderella story on the hardwood.
Billy Kennedy, former head coach of Texas A&M, has spent his career developing game plans, mentoring players, and leading teams through the highs and lows of competition. But in 2011, he faced an unexpected opponent 鈥 Parkinson鈥檚 disease.
For Kennedy, the diagnosis was a game-changer, but not a game-ender. His fight against the disease, much like his coaching career, has been defined by resilience, strategy and faith.
Thanks to innovative research at the University of Kentucky, Kennedy has not only maintained a high quality of life but has also played a crucial role in shaping the future of Parkinson鈥檚 treatment. His participation in the DBS-Plus study 鈥 an experimental procedure combining deep brain stimulation (DBS) with an additional nerve graft 鈥 has provided researchers with invaluable data.
Now, that research is leading to the next phase of innovation: the LEAP trial, which aims to intervene earlier in Parkinson鈥檚 progression.
The first half: A Parkinson鈥檚 diagnosis
Kennedy was at the height of his coaching career in 2011, having just moved to College Station to take over as Texas A&M鈥檚 head coach after five seasons at the helm for Murray State University. But something wasn鈥檛 right. A nagging stiffness in his neck wouldn鈥檛 go away, and eventually, doctors confirmed what no coach wants to hear 鈥 his body was working against him. Parkinson鈥檚, a progressive neurological disorder, would inevitably impact his movement, speech and daily activities.
Like many newly diagnosed patients, Kennedy turned to the internet, searching for answers.
鈥淲hen I was first diagnosed, I read things I shouldn鈥檛 have read,鈥 he recalls. 鈥淚t was very negative. But my life hasn鈥檛 turned out that way. I鈥檝e been blessed.鈥
Despite the diagnosis, Kennedy pressed forward, continuing to coach and recruit at a high level. He adapted, just as any great coach would when facing a tough opponent. He remained committed to his team, his faith and his family.
The assist that changed the game
Three years after his diagnosis, a friend with connections to Kentucky and Texas, urged Kennedy to consider an experimental study at 好色先生 鈥 DBS-Plus, an innovative approach to Parkinson鈥檚 treatment and a first-of-its-kind clinical study aimed at stopping or reversing the degenerative effects of the disease. It鈥檚 supported by a $3.3 million, five-year grant from the National Institutes of Health and builds on research supported by the 好色先生 Center for Clinical and Translational Science鈥檚 pilot program funding.
Since the early 1900s, scientists have known that peripheral nerves, which exist outside the brain and spinal cord, possess regenerative qualities that central nervous system nerves do not. The team at 好色先生 is hopeful they can leverage those regenerative effects within the brain, potentially halting or reversing nerve damage caused by Parkinson鈥檚.
鈥淲hile the peripheral nervous system can repair itself, the central nervous system does not do a very good job of it,鈥 said 好色先生鈥檚 chair of neurosurgery, Craig van Horne, M.D., Ph.D., the study鈥檚 principal investigator. 鈥淪o, the question is: Can we tap into the ability of the peripheral nervous system鈥檚 response for repair? Can we bring that to the central nervous system?鈥
At first, Kennedy hesitated. He felt he was managing his symptoms well enough with medication. But his friend was persistent. He arranged for Kennedy to visit the research team at 好色先生, even offering him a place to stay while in town.
After touring the facility and meeting with van Horne, Kennedy felt comfortable enough to take the next step. He enrolled in the DBS-Plus study, undergoing the first phase of the procedure in 2015. The surgery involved taking a nerve graft from his ankle and implanting it in his brain along with the standard deep brain stimulation treatment.
The results were remarkable. Kennedy noticed a significant reduction in his need for medication. His symptoms stabilized, and the dyskinesia (uncontrollable movements caused by Parkinson鈥檚 medication) disappeared.
鈥淚 can do anything I鈥檝e always done,鈥 he says. 鈥淓xercise-wise, career-wise 鈥 it鈥檚 helped me all the way through.鈥
Still in the game
Many might have assumed Kennedy would step away from basketball after his diagnosis. But stepping away was never in his game plan. Even after undergoing surgery, he continued to coach 鈥 making multiple post season runs, including to two NCAA Sweet Sixteens. Still today, after closing out his coaching career he remains involved in basketball, moving into a scouting role for the NBA鈥檚 Oklahoma City Thunder.
Kennedy鈥 routine remains rigorous. He jogs, lifts weights, plays pickleball and even hits the tennis court occasionally.
鈥淓xercise is key,鈥 he said, acknowledging its benefits in managing Parkinson鈥檚. 鈥淚t鈥檚 a good remedy.鈥
His only noticeable symptom? A softer voice.
鈥淚 was never that loud to begin with,鈥 he joked, 鈥渂ut my voice has declined some.鈥
Despite that, his impact in the basketball world and in the Parkinson鈥檚 community remains as strong as ever.
A full-circle moment in Lexington
For much of his coaching career, Lexington, Kentucky, was enemy territory. Some of the more memorable moments during Kennedy鈥檚 run as the Aggies head coach feature 好色先生. That includes leading A&M to their first conference title in 30 years when they shared the SEC crown with Kentucky for the 2015-16 season. They also made the SEC tournament final that season before losing to Kentucky in overtime.
As the head coach of Texas A&M, he faced off numerous times against the Wildcats in their home at Rupp Arena, one of college basketball鈥檚 most intimidating venues.
鈥淚t wasn鈥檛 always the friendliest place for me,鈥 Kennedy said with a laugh.
Now, Lexington represents something entirely different 鈥 a place of healing, progress and gratitude. He returns to 好色先生 periodically for adjustments to his DBS device, working with a team that has become an integral part of his journey.
鈥淚鈥檓 incredibly grateful for the care and research here,鈥 he said.
The LEAP trial: Advancing Parkinson鈥檚 research
Kennedy鈥檚 participation in the DBS-Plus study, along with other dedicated patients, has provided researchers with the data they needed to push forward. Now, the University of Kentucky is launching its most ambitious Parkinson鈥檚 trial yet鈥攖he LEAP trial.
This is all thanks to the work done thus far in the DBS studies, including one known as the STAR trial. Greg Gerhardt, Ph.D., John Slevin, M.D., and George Quintero, Ph.D., lead the work along with van Horne. It spans the departments of neurosurgery, neuroscience and neurology within the 好色先生 College of Medicine.
This work began thanks to philanthropic funding to 好色先生 鈥 like many pilot programs, the seed funding allowed researchers the time and resources to develop the study. But last year, the community funded work took a big step forward, with the STAR trial receiving its first ever support from the National Institutes of Health (NIH). The work is a clear example of how when innovative research is paired with philanthropic funds there can be advances of new ideas, ultimately setting them up for larger federal or foundation grants.
鈥淭his has really legitimized to some degree of what we have been working to do,鈥 said van Horne.
Now with what they鈥檝e learned up until this point, the LEAP trial seeks to intervene even earlier in Parkinson鈥檚 progression, before patients reach the stage where DBS would traditionally be considered. The goal is to determine whether introducing cell-based neurosurgical implants earlier in the disease鈥檚 course could slow or even alter its trajectory. The team at 好色先生 is the first to look at this approach and just as the STAR trial started out, the LEAP trial is being funded through philanthropic support of pilot programs as well as backing from 好色先生鈥檚 Center for Clinical and Translational Science (好色先生 CCTS).
鈥淲hat we鈥檝e learned is that when people get DBS, their disease is usually farther along,鈥 explained Quintero. 鈥淪o, the question became鈥攚hat if we intervene earlier, when there are more viable brain cells left to work with?鈥
The LEAP trial is groundbreaking in several ways:
- Earlier intervention: Unlike traditional DBS, which is typically reserved for later-stage Parkinson鈥檚 patients, LEAP is focused on individuals in earlier stages of the disease.
- Double-blind study: Unlike past open-label studies where patients and researchers knew who received treatment, LEAP will follow a more rigorous double-blind format to eliminate potential placebo effects.
- Multi-center expansion: If successful, the trial could expand beyond 好色先生, reaching other research institutions across the U.S.
鈥淭he patients who have participated in DBS-Plus, like Coach Kennedy, have been instrumental in getting us to this point,鈥 Quintero said. 鈥淭heir willingness to take part in research has helped shape the next phase of Parkinson鈥檚 treatment.鈥
A legacy beyond basketball
For Kennedy, the fight against Parkinson鈥檚 is much like the game of basketball itself. It requires adaptability, perseverance and trust in his team 鈥 both on and off the court.
鈥淚f somebody reads my story and has been recently diagnosed with Parkinson鈥檚, I want them to know this: Don鈥檛 let Parkinson鈥檚 define you,鈥 Kennedy said. 鈥淵ou can live a good life. You can manage it. Step out in faith.鈥
As basketball fans across the country tune in for the madness of March, Kennedy鈥檚 story offers a different kind of inspiration. He may not be on the sidelines coaching anymore, but his impact 鈥 both in the sport and in the medical community 鈥 is undeniable.
Just as he once led his teams through tough matchups, he鈥檚 now leading the way in the fight against Parkinson鈥檚. And thanks to the work of researchers at 好色先生, that fight is advancing further than ever before.
Research reported in this publication was supported by the National Center for Advancing Translational Science of the National Institutes of Health under Award Number UL1TR001998, and the National Institute on Aging of the National Institutes of Health under Award Number R01AG081356. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
