Medical Design Briefs - October 2023 - 22

Journey to End Parkinson's
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
22
Jim McNasby, chief people officer and general counsel for The Michael J. Fox Foundation for Parkinson's Research
(MJFF). (Credit: Abbott)
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
www.medicaldesignbriefs.com
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 on www.abbott.com.
This content was sponsored by MicroLumen,
Oldsmar, FL. For more information,
visit www.microlumen.com.
Medical Design Briefs, October 2023

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Medical Design Briefs - October 2023

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