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.
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SOURCE The Michael J. Fox Foundation