ANDREW KIST
ON THE COMMUNITY
Israel Robledo (left) and Steve DeWitte
MJFF: What role will the patient voice play
in the future of Parkinson’s research?
Israel: The voice of the patient will be much
stronger because that’s what happens when
we come together to focus on a cure and
the quality-of-life issues that impact people
every day. We need treatments to let people
live their lives.
Steve: The more the patient’s voice is
included in the research process, from
conception of an idea to development of a
treatment, the quicker the science will move
forward.
MJFF: What advice would you share with
others interested in getting involved in
PD public policy and advocacy efforts?
ful. It takes time and patience, but when we
develop our own personal message and stay
true to it, our passion comes through. We’re
committed to finding a cure.
Steve: I invited a state legislator to a sup-
port group. He looked around the room and
saw his friends and neighbors who he didn’t
know had Parkinson’s. He said, “When
we’re looking at a bill related to Parkinson’s,
I’ll think about my family, my friends and
my neighbors and it’ll impact how I vote.”
An advocate is someone who shares their
story in order to make a difference to help
themselves and others. Anybody can do it.
Israel: Think through your passions, and
Israel Robledo has served as Texas state director for
the Parkinson’s Action Network. Steve DeWitte
sits on the MJFF Patient Council.
COULD SMART DEVICES...
will allow researchers to investigate Parkinson’s disease, “off” episodes and the efficacy
of APL-130277.
develop a message to share with others. For
example, my style is tenacious but respect-
continued from page 2›
Measuring Drug Impact with Smart Tools
A small group of volunteers in the Cynapsus
Phase III trial will use a wearable computing device and the Fox Insight smartphone
application (developed by MJFF and Intel)
to contribute data on movement and
medication effect. The data will be securely
collected, de-identified and evaluated by
Intel, then stored in a cloud platform that
“At this point, this is a proof-of-concept
study testing feasibility and utility,” said
Sherer. “Is it possible to capture this data
easily? What can we learn from its analysis?”
Depending on the results of pilots like this
one, he adds, future studies may routinely
make use of wearable devices and smartphone applications.
SPRING/SUMMER 2016 13