NEW
YORK, March 24, 2016
The Michael J. Fox
Foundation for Parkinson's Research (MJFF) and the Parkinson's Action Network
(PAN) announced today that PAN will cease to operate as an independent
organization, with PAN integrating into the Foundation so that the two
organizations can operate as one to advance public policy priorities and better
treatments for people living with Parkinson's disease (PD). The move leverages
MJFF and PAN's respective expertise in drug development and public policy in
support of the 1 million Americans, and 5 million worldwide, living with
Parkinson's — the second most common neurodegenerative disease after
Alzheimer's.
"The
landscape of Parkinson's therapeutic development has evolved significantly
since The Michael J. Fox Foundation was launched in 2000, as have key policy
decisions related to health care delivery and reimbursement. The policy and
advocacy priorities of people living with Parkinson's have necessarily shifted
alongside," said MJFF CEO Todd Sherer, PhD. "Working as a single
entity, MJFF and PAN will bring the passion and commitment of our joint
community to bear on articulating and advancing key public policy priorities
affecting millions of PD patients and families."
A
"Continued and Deepened Engagement of the Nationwide Parkinson's
Community"
This
week, following approval by the Boards of both organizations, PAN filed for
dissolution with the California Attorney General, with approval expected within
eight weeks. In the coming months, PAN will transition its activities to MJFF
as part of the Foundation's new public policy department, which will operate
primarily out of Washington, DC. Ted Thompson, who served as president and CEO
of PAN from 2014 to 2016, joins MJFF as senior vice president of public policy.
Historically,
PAN has served as the unified voice of the Parkinson's community on public
policy and advocacy issues. A new Unified Parkinson's Advocacy Council
comprises representatives from state, regional and national PD organizations to
gather field-wide input on priorities and policy matters. PAN's grassroots
leaders program, which has been essential to strengthening local support for
policies that benefit patients, will transition to MJFF. A Public Policy
Council will provide expert guidance on policy strategies.
"As
two patient-founded organizations, PAN and MJFF share a deep respect for
keeping patients at the center of our priorities and programs," said
Thompson. "We are enthusiastic about the prospects for a continued and
deepened engagement of the nationwide Parkinson's community as we plot a new
path forward for Parkinson's public policy."
Advances
in Drug Development Call for Integrated Public Policy Strategy
Today,
more PD drug candidates are reaching late-stage clinical testing and entering
complex regulatory and reimbursement approval processes. For some untreated symptoms
of Parkinson's disease, such as cognitive decline, regulatory pathways may not
yet exist.
MJFF
is a key player in the direction and design of many drug trials, and expanding
its resources for public policy programming will allow the Foundation to play a
more holistic role in partnering with drug developers who until now have
navigated such processes and conversations on their own.
"More
potential treatments in clinical testing calls for an integrated strategy to
help regulators optimally support complex therapeutic development programs, and
to ensure sufficient access to new therapies as they come to market," said
MJFF CEO Sherer.
Dialogue
with Grassroots Community Will Direct Next Steps
This
spring, The Michael J. Fox Foundation and the Parkinson's Action Network
launched a dialogue with patients and close supporters of both organizations
with the goal of ensuring that programmatic activity reflects the top public
policy concerns of the community. The conversations began with a webinar and a
panel discussion at the annual PAN Forum moderated by journalist Mort
Kondracke, a founding member of the boards of both MJFF and PAN. Additional
feedback was captured through a survey. The conversation will continue
throughout the transition process, with community members invited to share
thoughts on policy priorities through the Foundation's closely monitored social
media channels including Facebook (facebook.com/michaeljfoxfoundation) and
Twitter (@MichaelJFoxOrg).
"This
unification clearly builds on the strengths of both organizations," said
Kondracke, who joined the Parkinson's advocacy community when his wife, Milly
Kondracke, was diagnosed with and ultimately succumbed to Parkinson's disease —
an experience recounted by Kondracke in his memoir Saving Milly.
"PAN's public policy experience will enhance MJFF's work to find new
treatments and a cure, and the MJFF community will amplify PAN's message of
advocacy and engagement."
Public
Policy Goals Extend Beyond Drug Development
With age the
greatest risk factor for Parkinson's, the number of people with the disease is
expected to double by 2030. As drug development programs march toward a therapy
that can slow or stop progression and better treat symptoms, there is a need
for infrastructure and access to support services.
PAN
has advocated for legislation such as the Advancing Research for Neurological
Disease Act of 2015, which aims to collect data on Parkinson's incidence and
prevalence to examine disease distribution and plan for health care services.
The organization also lobbies, for example, for repealing Medicare Therapy Caps
that limit the physical, occupational and speech language therapy an individual
can receive.
MJFF
will continue to evaluate and prioritize programs such as these that lay the
groundwork for better quality of life for people living with Parkinson's
disease.
"It's
not just new drugs that are important," said Israel Robledo, PAN Texas
state director, a member of the PAN Board of Directors and an MJFF clinical
research participation ambassador. "It's anything that improves a
patient's quality of life: therapy services, telemedicine, or improved
disability policies and veterans benefits. Our grassroots leaders have
experience advocating for all of these issues, and we look forward to working
with MJFF on these matters."
Learn
more about MJFF's public policy work and read a white paper summarizing
community priorities for Parkinson's public policy at www.michaeljfox.org/policy.
About
The Michael J. Fox Foundation for Parkinson's Research
As
the world's largest nonprofit funder of Parkinson's research, The Michael J.
Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and
improved therapies for those living with the condition today. The Foundation
pursues its goals through an aggressively funded, highly targeted research
program coupled with active global engagement of scientists, Parkinson's
patients, business leaders, clinical trial participants, donors and
volunteers. In addition to funding more than $600 million in research to
date, the Foundation has fundamentally altered the trajectory of progress
toward a cure. Operating at the hub of worldwide Parkinson's research, the
Foundation forges groundbreaking collaborations with industry leaders, academic
scientists and government research funders; increases the flow of participants
into Parkinson's disease clinical trials with its online tool, Fox Trial
Finder; promotes Parkinson's awareness through high-profile advocacy, events
and outreach; and coordinates the grassroots involvement of thousands of Team
Fox members around the world.
Information:
Papers filed with California Attorney General's Office for dissolution of PAN as independent 501(c)3
- Key PAN staff will join Foundation as part of MJFF's new public policy team
- Consolidation aims to streamline mission to advance Parkinson's policy priorities and better treatments for 1 million U.S. Parkinson's patients and 5 million worldwide
SOURCE The Michael J. Fox
Foundation
Related Links
http://www.prnewswire.com/news-releases/michael-j-fox-foundation-for-parkinsons-research-and-parkinsons-action-network-announce-plans-for-integration-300241149.html
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