I allowed myself to see what I already knew to be
true — meaningful contribution does not necessarily
require demanding, time-consuming trials. There are
many types of studies, some more compatible than
others with my time constraints. As I explored my
options, I realized my level of involvement could
change over time to suit my evolving lifestyle and
commitments. Since then, I’ve done online studies;
trials that require just a single visit to a clinic; and
some long-term research. One of the most important
things patients can do now is contribute to genetic
research, which may, in some studies, simply involve
sending in a sample of saliva. In whatever way life
allows, participation in clinical studies is vital.
Research is only possible with volunteers. In this way,
we play a critical role in changing our own lives.
Soania Mathur, M D, O ntario
Fighting back through research
My first reaction to my Parkinson’s diagnosis was to
fight back. I agreed to participate in a clinical study
the very day I was diagnosed. I knew the best way
to fight the disease was to advance treatments that
could slow or stop it from progressing. I continue
to enroll in as many studies as possible, and have
no plans to stop. It excites me to work directly with
researchers on the front lines of science that could
lead to a cure. That interaction is what gives me
energy. It makes me optimistic to see progress and
know that I’m actively taking part in it. I can feel
the enormity and the power of being involved in
something so important for myself and for everyone
who lives with Parkinson’s.
Lynn Hagerbrant, Connecticut
Changing personal perspectives
One of my biggest struggles with the disease
was knowing that Parkinson’s gets progressively
worse over time. I worried about my future, my
sense of identity and the potential loss of my
independence. As a researcher myself (albeit not
in the life sciences), I understood the importance
of clinical trials to advance disease understanding
and treatments, but I wasn’t sure I wanted to be
on this side of them. But I decided to get off the
bench, and the interactions I had with the scientists
themselves quickly affirmed that decision. Many
trial investigators I met had personal reasons for
being in the field. These connections drive them to
spend hours in the labs or caring for patients. This
notion continues to fuel my passion for research
participation today. Fighting Parkinson’s can feel
like such a solitary battle, but research unites
us. The connection to the broader Parkinson’s
community has changed the lens through which I
view my own disease.
Bryan Roberts, New York
Addressing logistical challenges
When my doctor told me that my increasing
twitching and tremors were caused by Parkinson’s
disease, I said “Okay, so what does that mean?” I
scoured Google and discovered professional
websites with a wealth of information. But my
searches also uncovered chat rooms, websites,
workshops, conferences and support groups. I
ventured out into the community and met many
people with Parkinson’s at different stages of their
disease. With them, I shared a desire to make a
difference and discovered the critical need for
research participants. When we learned a dismal
stat — less than one patient is recruited per clinical
site per month — we created the Clinical Trial
Transportation Program to help organize travel to
different clinical trials in the region. By channeling
our motivation to help willing participants overcome
transportation or access concerns, we hope more
trials can be conducted more efficiently, leading to
more Parkinson’s treatments.
Steve DeWitte, Connecticut
The passion we feel about being part of advancing
the Parkinson’s cure binds us, and the realization
that we are in this together empowers us. How
each of us came to research participation was as
individual as our experiences with the disease itself,
but the uniting thread was our desire to change the
course of Parkinson’s and change lives — including
our own. You, too, are an important part of this
community. You, too, hold the power to directly
impact your future and the future of millions living
with Parkinson’s disease. You, too, can experience
the tremendous power of research participation.
A Letter from The Michael J. Fox Foundation Patient Council
3