The Michael J. Fox Foundation Annual Report 2016 – Frameworks for Progress | Page 53

The Michael J. Fox Foundation (MJFF)
recognizes the critical role of Parkinson’s
patients and families in drug development
research; as such, we have significantly
expanded our efforts to engage, educate
and mobilize a broad cross-section of people
with PD and their loved ones.
In light of the advancing state of
Parkinson’s research overall, it has
become clear that bringing treatments
over the finish line today requires a
concerted focus on Parkinson’s public
policy. In March 2016, MJFF and the
Parkinson’s Action Network (PAN)
announced the dissolution of PAN and
MJFF’s decision to take on PAN’s mission
to bolster policy and advocacy efforts
serving the Parkinson’s community.
The Foundation is building a policy
program that addresses three priority
areas: securing federal research funding
for Parkinson’s, bringing effective new
therapies to patients without delays or
sacrificing safety, and safeguarding access
to care for patients and their loved ones.
MJFF also maintain s strong relationships
with the PD community and provides
resources to help patients and their
families connect with educational
resources, optimized clinical care and
technology-based platforms to access
clinical studies.
— Launched in 2012, Fox Trial Finder
connects potential PD research
volunteers — patients and controls
— with studies at clinical centers
that need them. More than 65,000
individuals have registered to date.
— Fox Insight is a portal of virtual
research opportunities where patients
and controls participate remotely
through prompting to report
symptoms, treatments, quality of life
and family medical history every 90
days. Data is anonymous and available
to researchers worldwide. The
platform also incorporates data from
other tools such as mobile apps that
work with Apple’s recently launched
ResearchKit software platform,
which has enrolled more than 5,000
participants since its beta launch,
smartwatches and wearables.
— Our monthly research-focused
webinar/podcast series features MJFF
Contributing Editor Dave Iverson, a
veteran journalist who himself lives
with Parkinson’s. The series now
routinely attracts up to three thousand
registrants a month. Movement
Disorders Specialist and MJFF Vice
President of Medical Communications
Rachel Dolhun, MD, uses digital
platforms (web and social) to field the
community’s most frequently asked
questions, through her Ask the MD
series and Facebook Live broadcasts.
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