As far as epic journeys go, 1.2 miles is pretty manageable and quite lovely. New York’s Central Park in April. There are worse places to be. And worse reasons to be there. Because, on this spring morning, an impressive group of people has united to continue their journey to a place many thought could not be reached. A place where Parkinson’s disease no longer exists.
This is the Parkinson’s Unity Walk, one more path on which explorers like Jim McNasby, 53, Chief People Officer and General Counsel for The Michael J. Fox Foundation for Parkinson’s Research (MJFF), take on a degenerative neurologic condition diagnosed in nearly 1 million Americans, 10 million worldwide.
We know Jim because [Abbott] featured his story before — and his role in efforts to end Parkinson’s, both through his professional role and in supporting the Unity Walk itself, are well-known in the community.
McNasby — individually and paired with his husband, Donny Moss (as Team McMoss) — has been a top Unity Walk fundraiser, bringing in more than $100,000 this year and $1 million-plus over the last decade.
We know Parkinson’s because Abbott’s neuromodulation business developed the Infinity Deep Brain Stimulation (DBS) system, a strong tool that has helped McNasby live a better quality of life with the condition over the past several years.
Abbott has supported and worked extensively with the Parkinson’s community, including advocates like MJFF, for years, understanding that unified action is the best path to success.
The Road Less Traveled. Until Now. Parkinson’s is second only to Alzheimer’s as the most common neurodegenerative disease and, like Alzheimer’s in 2011, is the subject of historic national legislation geared to slow and, eventually, end the disease.
When enacted, this legislation, currently working its way through Congress as the National Plan to End Parkinson’s Act (National Plan), will support multiple approaches to combat the effects of, and hopefully eradicate, the disease.
“There are three primary pillars to the National Plan,” said Mason Zeagler, public policy officer at MJFF. “It will unite the federal government and private enterprise in a mission to prevent and cure Parkinson’s, while simultaneously working to improve the quality of life for those currently living with the disease.”
This journey has many participants, and the National Plan is designed to provide them all the support necessary.
“What often happens at the federal level is that individual agencies work in silos. This bill will get all the right people around the same table,” Zeagler said.
The precedent bodes well.
“In 2011, Alzheimer’s took the same path, and since then federal research jumped from hundreds of millions to billions of dollars,” Zeagler said. “Our goal is to ensure the best outcomes for the most people. We’re coming at it from all angles to get advocates and the grass roots movement engaged.”
Road Warrior. McNasby gets it because he’s lived it. For almost a quarter century. “I tell people that it’s a long journey and a long battle that we’re in for.” But few have trained harder or longer than him to help lead this work.
McNasby was diagnosed in 2000 at age 31, far younger than most people with Parkinson’s. After years of medication treatment that became less effective over time, the Infinity Deep Brain Stimulation neuromodulation device was implanted in 2020, which, in his case, had an immediate impact.
His unique position as both Chief People Officer with MJFF and a person with Parkinson’s gives him a particularly focused perspective.
“Along with the CEO, I get to make the hiring decisions for people brought in to spend each day solving a complex problem like Parkinson’s,” he said. “That makes me feel strong. Like I’m doing something palpable. Here is a person who is here to help me get better. That’s a strong incentive to get it right.”
His personal and professional stakes in MJFF efforts mirror his broad view of the work that needs to be done, both for people like him with the diagnosis, and for the generations to come that he hopes never have to face his challenges.
Having the Right Tools. “Research is essential,” McNasby said. “MJFF is currently funding more research than the federal government, and that’s not the right ratio. We need them to catch up and pass us.”
With adequate resources, the future looks promising. Much research is focused on identifying biomarkers that will reduce the impact on future generations.
“We’re funding clinical trials that will provide biologically based criteria for whether a treatment is working, not just determining if a drug is effective based on how fast one snaps their fingers.”
MJFF is monitoring 145 unique therapies in clinical testing that are targeting novel pathways, addressing the underlying disease biology or symptoms of the disease.
Soon they expect to assess biomarkers over time and chart the progress and limitations of Parkinson’s. “That level of empiricism will help us establish prevention strategies and develop better treatment plans,” McNasby said.
Dialing Up Hope from a Paramus Parking Lot. But the impact of all this work is not limited to the physical. Every journey takes a psychological toll, especially one with such unique components. There is no place for false optimism.
But there is considerable room for legitimate hope. Hope in technology.
“I was in the Catskills [in New York] when I noticed I was having some problems. I contacted my doctor, who, using the Neurosphere Virtual Clinic device that controlled my Infinity DBS, was able to diagnose the problem while she was sitting in a parking lot in Paramus, New Jersey,” McNasby recalled. “I felt like it was 2250, and I was in outer space. When the current state feels like science fiction, that gives you hope.”
We are doing our best to provide the technology that helps people literally walk the walk and live each day to its best advantage.
Hope in people. “At the Foundation, we have 18 PhDs and a diverse, highly qualified team with a wide range of skills,” he said. “Our greatest strength is that we can put five or six of these people in a room and, because of their talents and diverse points of view, they will come up with the best possible solution to an issue.”
Hope in legislation. Remember those 144 clinical trials from earlier? There were almost none in 2000. Groups like MJFF have carried that heavy weight for decades and could use some help in getting over the finish line. The pending bill will greatly assist that push.
The long road toward ending Parkinson’s is not a typical one. It is far from linear, has innumerable hills and valleys, and we’ll likely only sense reaching the destination before actually seeing it.
It is indeed a “long journey and a long battle.” But we are at a unique time when that finish line just might be coming into view — if the necessary resources and talents can be focused to best effect. It’s called a Unity Walk for a reason.
Reprinted with permission of Abbott Labs, Chicago, IL. Reprinted with permission of Abbott, Chicago, IL. Read the original article here .
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