Supporting Loved Ones
through Research
When Karen Jaffe was diagnosed with Parkinson’s
disease (PD), her husband, Marc, looked for
ways to help. He learned studies need control
volunteers, and was eager to participate. “I wanted
to provide more than emotional support to Karen,
and this was a tangible way to do that,” says Marc.
Still, he didn’t jump immediately at the chance.
He admits he had hesitancies about certain
study procedures, and worried that testing
might uncover an abnormality in his otherwise
good health.
But six months later, Marc gave Karen an
unexpected gift — his enrollment papers for
MJFF’s Parkinson’s Progression Markers
Initiative (PPMI).
Marc jokes that he joined PPMI, an observational
study looking for PD biomarkers (objective
measures to diagnose and track disease),
because he didn’t have an anniversary present.
On a serious note, he adds, “When I learned how
critical biomarker research is, it made it easier to
set aside any concerns I had.”
As part of PPMI, Marc now undergoes annual
testing. He’s had pictures of his brain taken,
and given blood and spinal fluid. He’s also filled
out questionnaires about his sleep and had his
memory tested. In the years since he joined,
Marc hasn’t missed an appointment. He has
had procedures done at different centers with
different doctors, and says each makes the
experience as comfortable as possible.
Marc participates in other trials, too. When he and
Karen are both eligible for a study, they use the
opportunity to drive research together. “We see
so much progress,” Marc shares. “When you’re in
research, you feel things moving, and you see the
finish line in the distance. It’s great to be part of
the process pushing us closer.”
Watch more of Karen and Marc’s story at michaeljfox.org/ParticipantPack.
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Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families