THE FOX FOCUS...
ON THE COMMUNITY
by cheryl blowers
D
an Kinel believes that a PD
diagnosis changes your life in
dramatic ways, but not the core
of who you are — or your
capability to help speed a cure. It is this
outlook that led him to support
The Michael J. Fox Foundation and
become an advocate for connecting other
patients and their loved ones with the
urgent need for clinical trial participants.
Dan was diagnosed several years ago, in
his early forties, with young-onset
Parkinson’s disease. Married with two
young boys and working as a partner in a
law firm in Rochester, New York, Dan was
familiar with The Michael J. Fox
Foundation (MJFF), but began his
involvement by chance. One weekend
shortly after learning he had PD, he
happened to be staying at the hotel where
MJFF’s first clinical trials fair was being
held. When he walked in, his only agenda
was satisfying his own curiosity.
What Dan discovered was that the
majority of trials are delayed or fail due
to lack of participation. Yet, there were
numerous ways to take part in research
through both traditional, “brick-andmortar” studies and digital trials. So he
signed up to become a Fox Trial Finder
Ambassador, helping other patients and
families locate research opportunities that
are right for them. He has also taken part
in nearly 10 trials himself, including both
interventional and observational studies.
As a supporter of MJFF, Dan is
invigorated by the Foundation’s strong
focus on pushing promising research
forward, and its optimism. This viewpoint
also extends to his family. Dan credits his
supportive wife Ellen and sons Oren, 11,
and Gil, 9, for sharing their positivity and
motivation to end PD with both him and
their community. Last year, Gil even
organized a local Back to the Future-themed
bake sale, and Oren created all the signs
and other advertisements; together they
raised nearly $500.
In the spring of 2015, Dan hosted the
first MJFF Research Roundtable in upstate New York at his office, drawing more
than 100 PD patients, physicians and
caregivers. Its panel discussion featured
MJFF staff, a Scientific Advisory Board
member and a researcher who helped
developed a mobile app for PD patients
to monitor health and track symptoms.
Dan continues to hear from many of the
guests, with several sharing how they have
now signed up for trials, including MJFF’s
Parkinson’s Progression Markers Initiative.
He plans to host another event in 2016.
Dan is eager to share his journey with
fellow patients and their families and
friends — helping them fuel the drive for
a cure, together. “Keep doing what you’re
doing,” he says.“PD can’t change who you
are or what you can achieve.”
TEE OFF FOR A CURE
STUDIO1923
Welcoming Patients to Clinical Trials
Jimmy Roberts, Ted Davis, Michael J. Fox, Peter Benedek, Harlan Coben (left-to-right) and honorary
co-chair Ed Levy (standing) at the 2015 Breaking PARkinson’s Golf Outing
In July, The Michael J. Fox Foundation hosted its annual golf outing at Winged Foot Golf
Club. The 2015 Breaking PARkinson’s event, chaired by Board members Holly S.
Andersen, MD, Edward Kalikow, Andy O’Brien and Sonny Whelen, welcomed more than
140 golfers and raised more than $680,000 for Parkinson’s research.
YOUR LEGACY:
A WORLD
WITHOUT
PARKINSON’S
DISEASE
The Michael J. Fox Foundation’s planned giving socie B