“Never doubt that everyday people like
you and me are the most important
part of the complex and expensive
drug development process.”
the progression of disease, which no current
treatment can yet do. There are observational
studies gathering new knowledge about the causes
of disease, how it changes over time and how it’s
linked to genetics. And there are studies that need
loved ones of patients and even people with no
familial link to PD. Every one of these represents a
different way to get involved.
Never doubt that everyday people like you and me
are the most important part of the complex and
expensive drug development process. Don’t believe
me? Ask a scientist. They’ll tell you: All the research
funding in the world doesn’t matter without the
only people who can answer the question of whether
the science is helping anyone — those living with
the disease.
So where do we go from here? After reading this
book, you and I both have a lot of options. We’ve
gained a better understanding of how clinical trials
work. We’ve been reminded of the importance of
research. And our consciousness has been raised to
the critical need for more participants. So let’s put
that information into action. Start with small steps:
Talk to your doctor about clinical studies in your
area, ask people you know with PD what’s caught
their attention, and register for Fox Trial Finder
(foxtrialfinder.org). You’ll be participating in a trial
before you know it.
People volunteer for research for different reasons:
to take control, get early access to new medications
or be seen by doctors at top research centers. But
when all is said and done, the why of it doesn’t
matter as much as that more of us simply do it.
I started out with one objective — to get into a trial
for a new drug that may slow progression. Over
time, I continued for more altruistic reasons — I
don’t want my children and grandchildren to have
to deal with Parkinson’s.
As it turns out, even if I think I’m doing this for
other people, with every study I benefit too. I learn
something new about the disease, myself, or both.
And I come away from every appointment feeling
a renewed sense of my own power to change the
course of Parkinson’s disease history.
There are still too many questions about
Parkinson’s. But as Michael J. Fox has said, we can
be part of the answer. In fact, we’re the only ones
who can. Join me.
Gary Rafaloff
Gary Rafaloff, 65, was diagnosed with Parkinson’s at age 60. He lives in Marlboro, New Jersey, with his wife, Bobbi.
When he’s not “shaking up the community” to advance Parkinson’s research, Gary can be found spending time with
his three children and two grandchildren, practicing tai chi, and adding a second scoop to his nightly dish of rocky
road ice cream.
Afterword: Where Do We Go from Here?
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