As people living with Parkinson's and their loved ones know, you are — and often must be — your own best advocate. By telling lawmakers what matters to people with Parkinson’s and sharing your story, you play a critical role in helping fund research toward a cure and ensuring there are programs and support for our community.
About the Parkinson’s Policy Network
The Parkinson’s Policy Network is The Michael J. Fox Foundation’s (MJFF) grassroots advocacy program. Our network provides you with resources to help make your voice heard and build relationships with elected officials and their staff.
You can make a real difference by signing up to join the Parkinson’s Policy Network. What does that mean? It means you will join the Parkinson’s community in asking Congress, The White House and your state officials to support finding a cure for Parkinson’s disease (PD), and to care for those already living with PD.
How does it work? When you sign up, you will receive policy updates and timely action alerts. We make it easy for you to contact your elected officials about what people with Parkinson’s need, and what the scientific research field needs to find a cure. By sharing your personal story, you can help shape legislation that impacts the entire community.
“I went from patient to advocate in a day. The feeling of being able to serve…to be able to offer up my story as much as it is uncomfortable, it’s a tremendous privilege.”
Michael J. Fox
Thanks to our advocates, in recent years we have seen significant public policy advances in the Parkinson’s arena. Here are some of our recent accomplishments.
The Impact of Public Policy
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Supporting Veterans
We helped secure benefits coverage for veterans with Parkinson’s and atypical parkinsonism who served in waters offshore of Vietnam.
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Endorsing Research and Data Collection
We lobbied for federal research funding and congressional support to make Parkinson’s a priority within the National Institutes of Health that fund Parkinson’s research. In addition, we enacted a national Parkinson’s database at the Centers for Disease Control and Prevention.
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Advocating for Better Care
We helped secure reimbursement for remote programming of deep brain stimulation, the most common surgical treatment for Parkinson’s disease.
Ready to take action?
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Urge Congress to Support U.S. Veterans with Parkinson's
As Congress makes critical budget decisions, they need to hear from you about the urgent need to fund Parkinson’s research and care for military servicemembers and veterans. -
Tell the White House: Ban Paraquat Now
Paraquat is an herbicide that is thought to increase Parkinson’s risk by 100 to 500 percent. Sign our petition to tell the White House: The U.S. must join 70 other countries and ban this harmful chemical. -
Urge Your Representatives to Cosponsor the HEALTHY BRAINS Act
Please reach out to your U.S. representatives to ask for their support of a new bill to research the link between environmental risk factors and neurodegenerative diseases including Parkinson's disease and atypical parkinsonisms. -
Improve Early Detection of Cognitive Impairment
Catching cognitive impairment — a worrisome symptom of neurological diseases like Parkinson’s — is crucial to putting patients on the right treatment path. Tell Congress to advance the CHANGE Act to improve earlier detection of cognitive changes in patients. -
Support Patient Access to Tests Used to Diagnose Parkinson’s
A drug that contains a radioactive substance, known as a diagnostic radiopharmaceutical, can help health care providers diagnose and determine the severity of diseases like Parkinson’s. But these drugs are not available to all Parkinson's patients. Urge Congress to expand access now. -
Thank Congress for Passing the National Plan to End Parkinson's Act
On July 2, 2024, President Biden signed the National Plan to End Parkinson’s Act into law! Please thank your members of Congress for passing this bipartisan bill. -
Tell Congress to Fund Critical Parkinson’s Research and Care
Congress is currently making budget decisions for fiscal year 2025. Tell them to fund Parkinson’s research and care now. -
Help Advance the Safe Step Act
Advocate for legislation that would change protocols that prevent people with Parkinson's from accessing the medication they need. -
Tell Congress to Ban Harmful Toxins Linked to Parkinson's
Ask Congress to support a bill that calls for banning paraquat and other dangerous pesticides used in farming and agriculture. -
Interested in Parkinson’s Advocacy? Join Our Policy Network
Share your contact information and we’ll make sure you receive the latest action alerts and policy updates directly to your inbox.
Make Your Voice Heard
Whether public policy and advocacy work are second nature or you’re just getting started, you can be an effective advocate. Check out our advocacy resources designed to bring you up to speed on Parkinson’s policy issues and show you how to take action on them. No matter what you decide to do — meet with your lawmaker in person or virtually, advocate on social media and/or write about Parkinson’s-related policy issues in traditional media outlets — it’s important to speak up for yourself and the PD community.
Taking Advocacy to Another Level: Parkinson’s Policy Ambassadors
Some of MJFF’s most engaged volunteers become Parkinson’s Policy Ambassadors. Ambassadors commit to building strong relationships with members of Congress and to advocating in support of Parkinson’s policy priorities. Ambassadors receive specialized training and work with MJFF policy staff to become the go-to resource for Congressional offices and provide critical information back to MJFF staff. Read our FAQs below to learn more.
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Who can be an Ambassador?
Anyone can become a Parkinson’s Policy Ambassador. There are skills and qualifications we look for when selecting Ambassadors, including personal connection to Parkinson’s, strong public speaker and interest and understanding of public policy and politics. Learn more in our role description.
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What will I be asked to do if I become an Ambassador?
Ambassadors serve as liaisons between the Parkinson’s community and their elected officials and staff. Ambassadors are asked to contact members of Congress concerning important legislative issues in a timely manner; meet with elected officials throughout the year; participate in webinars and trainings; act as community connectors, and report back to MJFF.
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What does the Ambassador training program entail?
Ambassadors attend monthly webinars and have access to online resources. Through this training program, we equip Ambassadors with the skills needed to become an effective advocate. Ambassadors are offered opportunities to reinforce learning by sharing challenges, developing new ideas, and creating solutions with peers and MJFF policy staff.
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How long will I be an Ambassador?
The training program is approximately one year long. We ask Ambassadors to join us for two-year terms to correspond with the Congressional cycle. You can be an Ambassador as long as you’d like.
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Who can I contact with questions about the program?
If you have any questions, please contact Sarah Weissmann, MJFF Associate Director of Grassroots Engagement at sweissmann@michaeljfox.org.
Want to tell us about a meeting or share your story?
Please complete this form to tell us about any meetings or engagement you have with elected officials. In addition, we are always looking to feature policy advocates in our communications. Please contact us at shareyourstory@michaeljfox.org.