THE FOX FOCUS...
“When We Share Our
Commitment to a Cure, Our
Passion Comes Through”
As the Michael J. Fox Foundation and the Parkinson’s Action Network
announce plans to integrate and operate as a single entity, Parkinson’s
patients and advocates (and good friends) Steve DeWitte and Israel
Robledo talk to MJFF about the power of the patient voice and their
hopes for the future of Parkinson’s public policy.
MJFF: What was your path from being
diagnosed with Parkinson’s to becoming
leaders in the PD community?
Israel: For me it was first about coming to
terms with my diagnosis because I was only
42. I had work and family responsibilities
to fulfill. I went through depression, where
the focus was on me and my concerns about
the advanced stages of the disease. But after
about nine months, I turned a corner and
decided the focus would be on supporting
others and finding a cure.
Steve: I was about 46 when I showed
symptoms. I didn’t know what PD was. I
did a lot of research online. That’s when I
first connected with Israel, because he was
writing a great blog. I went from learning
to a more proactive stance. I was diagnosed
in 2005 and soon after, I started a support
group with eight people. Now we have three
chapters and more than 150 people. Some
of them have gone on to raise funds for
research, take part in clinical trials or speak
with legislators.
MJFF: What is it like to see results emerge
from your advocacy?
Israel: I always had an interest in the politi-
cal process, and I enjoy talking to my congressman and my senator to share why research is needed. One day my representative
12 THE FOX FOCUS
said to me, “I think of you when Parkinson’s
comes up on the floor. You have showed me
what it’s like to have Parkinson’s.”
Steve: I formed three principles, or areas, that
patients must take on themselves — education,
clinical trials and advocacy. There’s no better
way to say, “This is why we need a treatment,”
than to have a patient tell that story.
MJFF: You’ve also both taken part in clinical trials. Why is research participation
important to you?
I