Research
CREATING CRITICAL INFRASTRUCTURE
TO SUPPORT POLICY WORK
by ALLYSE FALCE
GALVANIZING THE PARKINSON’S
COMMUNITY
In March, The Michael J. Fox Foundation (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 public
policy and advocacy efforts serving the Parkinson’s
community.
Our greatest resource in furthering a PD policy
agenda remains working with people with the
disease and their loved ones. A network of 140
policy volunteers (formerly PAN State Directors
and Assistant State Directors) is helping shape our
advocacy initiatives and educate policymakers on
the need for PD research and care support.
In the last decade, the state of Parkinson’s disease
(PD) drug development has evolved significantly,
and as a result, so have policy priorities. More
treatments in clinical testing and increased
understanding of the nuances of this disease
require an integrated research and policy strategy
to work with lawmakers and payers who dictate
access to therapies. Additionally, federal funding
must keep pace with research needs, emerging
opportunities and support services to improve the
community’s quality of life.
“Patients and loved ones provide a critical
perspective in all aspects of the legislative process
regarding Parkinson’s disease policy initiatives,”
said Carey Christensen, an MJFF Patient Council
member and longtime policy advocate. “It’s
important that we build relationships with our
elected officials so we have champions on Capitol
Hill and in state and local governments.”
The MJFF community at large is already speaking
up. In the last five months, you’ve sent over 15,000
emails to members of Congress asking them to take
action on important policy issues. The Foundation
will continue to inform the community and ask for
its support when key legislation makes its way to
Capitol Hill.
The Foundation is in the process of building its
programmatic infrastructure to support this work,
and we hope you will join us in making your voice
heard (see box, opposite page).
BUILDING AN INTERNAL POLICY TEAM
Because public policy exerts a direct effect on
the scope of PD research and the quality and
availability of patient care, staff from several
existing Foundation teams have transitioned to
work on policy issues.
The Foundation also has established several
councils to further collaboration with the
Parkinson’s community on policy matters,
including senior leaders of national, regional
and state PD organizations and individuals with
experience in advocacy, government and politics.
In addition, the Foundation has defined new roles
devoted to policy. Ted Thompson, JD, former
CEO of PAN, joined MJFF as senior vice president
of public policy in June. In September, Brittany
Meyer began as an associate director, focusing on
research and drug development and approvals.
In the coming months, MJFF will work to
articulate a community-informed action plan for
Parkinson’s policy. With internal staff, external
experts and a passionate Parkinson’s community,
we are confident in the sound structure that exists
to advance our policy goals.
MJFF is working to hire an additional associate
director who will work on access-to-care issues and
coordinate with the bodies that regulate Medicare,
government benefits and other resources essential
to patients’ well-being.
Learn more about how public policy can
speed a cure at michaeljfox.org/policy.
Research
“ We will open
doors that
were previously
closed”
Monnie Lindsay, JD, is an
Omaha-based lawyer at
Georgetown University Law
Center with a specialty in
insurance and health law who
has lived with Parkinson’s for
more than two decades.
Monnie with former representative Lee Terry (R-NE)
How did you get involved with PD policy
work? Was it influenced by your professional
and personal experiences?
A member of the newly formed MJFF Public
Policy Council — which comprises experts
who have extensive government experience
and advise the Foundation on policy matters
— Monnie talks about the past, present and
future of her policy work with the Parkinson’s
disease (PD) community.
MAKE
YOUR
VOICE
HEARD
After being diagnosed with Parkinson’s at age 38,
just four years out of law school, I developed a
passion for supporting our community.
(continued on page 18)
TAKE
ACTION
Contact your elected officials and let them know how public
policy impacts the Parkinson’s community. Visit our website
for a list of bills currently moving through Congress that could
affect patients, families and Parkinson’s researchers. You can
also compose your own message to send to your U.S. senators
and representatives.
Take action now at michaeljfox.org/congress.
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The Fox Focus
Fall/Winter 2016