THE FOX FOCUS...
A NEW FUTURE FOR PARKINSON’S PUBLIC POLICY
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the field held only a rudimentary understanding of the biology of PD, little biomarker
development was taking place, researchers
were working with the (now-eclipsed) premise that dopamine replacement alone could
meet Parkinson’s patients’ medical needs
and few promising drug candidates were
advancing toward clinical testing.
Today, more drug development programs
are reaching late-stage clinical testing and
more companies are individually developing
regulatory and reimbursement strategies
where a collaborative approach, orchestrated by a centralized and unbiased convener,
could be more effective. Joint leadership
from MJFF and PAN also will help reduce
redundancy among drug developers who
until now have navigated such processes and
conversations on their own.
“The integration of PAN and Fox brings
together the best of both organizations,”
said Carol Walton, CEO of The Parkinson
Alliance and executive director of the Parkinson’s Unity Walk. “PAN’s public policy
expertise and MJFF’s research background,
coupled with a knowledgeable and engaged
patient community, will create the best
possible outcomes for those living with
Parkinson’s disease today.”
Community Dialogue
Earlier this spring, MJFF and PAN
launched a dialogue with members of both
organizations’ communities to ensure
that Fox’s program addresses patients’ top
public policy concerns. In February, PAN’s
grassroots advocacy leaders participated in
a webinar with Sherer, Thompson and PAN
Texas State Director and Board member
Israel Robledo to learn about the integration and provide feedback on programmatic
priorities. At the annual PAN Forum, the
4 THE FOX FOCUS
conversation continued in a session featuring Sherer and Thompson that was led by
Mort Kondracke, a founding Board member
of both organizations. Attendees asked
questions, shared concerns and offered
thoughtful insights about Parkinson’s policy.
(Community feedback gathered at the webinar and Forum have informed both a white
paper available at michaeljfox.org/policy and
planning for the Foundation’s programmatic
activities.)
A committee comprising members of PAN’s
Grassroots Leaders program, which has
been essential to strengthening local support
for policies that benefit patients, will give
patients a seat at the table and will help
shape MJFF’s advocacy efforts. Representatives of state, regional and national PD
organizations who formerly sat on the PAN
Board now will participate as part of the
Foundation’s Unified Parkinson’s Advocacy
Council, providing ongoing counsel to
ensure MJFF remains the unified voice of
the PD community on all policy matters.
The Foundation also is forming a Public
Policy Council made up of experts who
can provide guidance and advice on policy
strategies.
“The high-quality work of PAN and MJFF
grassroots advocates will make this a very
effective partnership,” said Robledo. “It’s
not just new drugs that are important — it’s
anything that improves a patient’s quality
of life, such as therapy services or telemedicine. Our leaders bring breadth and depth of
experience advocating for all these issues.”
To learn more about MJFF’s new public
policy department, or to read our white
paper, please visit michaeljfox.org/policy. To
read a Q&A with Israel Robledo on Parkinson’s policy, turn to page 12.