A Letter from
The Michael J. Fox Foundation
Patient Council
A Parkinson’s diagnosis affects everyone differently. For
some, the news may inspire a desire to take action, though
it’s often hard to know where to go or what to do.
For others, diagnosis may bring uncertainty, fear
or denial. There is no wrong response to such a
life-changing event — only your response. As
active members of the Parkinson’s community,
and colleagues on The Michael J. Fox Foundation’s
Patient Council, we have found common ground
in our belief that clinical research participation is
a critical part of our experiences. It motivates us,
inspires us, empowers us and gives us purpose as we
navigate daily life with the disease.
We each took a different path to volunteering. While
a few of us were champing at the bit from literally the
day of diagnosis, most took some time to get here.
(That’s natural, though we also want you to know
that some of the most important studies are open
only to those in the very earliest stages of disease.)
Many factors, such as age at diagnosis, geographic
location, access to care and knowledge of research
opportunities, influenced our decisions along the
way. Trials, in turn, need us — as well as people who
don’t have Parkinson’s — at different times and for
different reasons. While some trials need people who
are new to Parkinson’s, others need those who have
lived with the disease for years. Sometimes people
are excluded by their genetic status or having had
deep brain stimulation surgery; other times, those
are exactly what the study requires.
We hope our experiences help you find your own
path with Parkinson’s, and, more importantly,
remind you that you are not alone in the journey.
Seeing the right doctor matters
It took me several months to come to terms with
what my diagnosis meant for my future. Even then, I
wasn’t quite sure what was in store for me. I realized I
had to do what I could to help myself, and ultimately
help others, while I was able. But I didn’t know
where to begin. My local neurologist recommended
a movement disorder specialist — a neurologist
with specialty training in Parkinson’s. Movement
disorder specialists bridge the gap between research
and patient care, so they are uniquely positioned
to suggest ongoing trials that may be well suited
for specific individuals. I registered for my first
study shortly after my doctor recommended it.
The experience has given me confidence, hope and
motivation. Now I use social media to encourage
other people with Parkinson’s to connect with
movement disorder specialists and ask about trials.
Simply put, there is nothing more empowering than
being part of research toward a cure.
Israel Robledo, Texas
Research comes in many forms
As a family physician, I knew the importance of
research to advance disease understanding and
therapeutic breakthroughs. I often encouraged
my patients to join clinical trials, but I never
participated myself. I was convinced I was too busy,
and rested on that excuse for years. Slowly, though,
The Michael J. Fox Foundation Patient Council advises the Foundation on programmatic strategies to best convey
patient priorities to the research community and its funders; content and emphasis for patient education and
outreach relevant to our mission to find a cure; patient roles in developing novel ways to conduct research; and
mechanisms for impact assessment.
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Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families