The Michael J. Fox Foundation (MJFF) works to ensure government policies accelerate the development of new, improved Parkinson's therapies and increase quality of life for people and families with Parkinson's disease (PD).
Why do we do this work? Because Parkinson’s costs our country at least $58 billion every year. Our mission is to end Parkinson’s so that $58 billion (which will grow to $79 billion every year in about 15 years) can be used for other needs.
To do that, MJFF and its nationwide network of policy advocates educate federal and state lawmakers about the need for federal research funding toward a cure. We also advocate for federal and state policies and programs to support people living with PD until that cure is found.
2021 saw significant public policy advances in the Parkinson’s arena. This is in large part thanks to our advocates. Last year, more than 15,500 people in our community sent over 67,200 emails to lawmakers to ask for their support of people with PD. Many also held virtual meetings with elected officials. Here we share what we were able to accomplish in 2021:
- Met with White House senior advisors about our community’s priorities;
- Secured inclusion of Parkinsonism for U.S. Department of Veterans Affairs (VA) coverage for those exposed to Agent Orange in Vietnam;
- Supported legislation to ban paraquat, an herbicide linked to Parkinson's;
- Protected patient privacy through overturning a harmful U.S. Environmental Protection Agency rule;
- Supported legislation to conduct research into cannabis;
- Educated Congress and the Administration about the importance of continued access to telehealth, mental health counseling, expanded Medicare coverage, medication affordability and access, and support for family caregivers;
- Secured Medicare reimbursement for remote adjustments to deep brain stimulation; and
- Helped fund the California Parkinson’s Disease Registry and accelerated progress in creating registries in four additional states.
The nation is waiting for the U.S. Senate to advance the fiscal year budget so that the President can sign it. In that budget includes a series of federal research funding initiatives around PD. It also includes a call from Congress to various institutes within the National Institutes of Health to prioritize Parkinson’s research.
What’s in store for 2022?
2022 will be a big year for Parkinson’s disease in public policy. Our work toward increased research funding continues, as does our work toward ensuring access to the best data for researchers. We’ll also continue to support and advocate for policies and programs that improve quality of life for people living with Parkinson’s and their family caregivers. Here are some areas where we expect to have an impact, and we look forward to the community’s support:
- Continued commitment from PD-relevant institutes at the National Institutes of Health to prioritize Parkinson’s research;
- The Department of Defense creating a new pool of research funding toward a cure for PD;
- Increased access to care and affordable medication;
- The creation of new state-based Parkinson’s disease registries that will gather localized information about Parkinson’s diagnoses to better aid researchers about PD hot spots;
- Growing our network of grassroots advocates to ensure federal and state lawmakers know what it’s like living with PD and why we need a cure;
- Collaborating with the VA to ensure veterans with Parkinson’s get the care they need;
- Eliminating environmental triggers of PD; and
- Ensuring there is a national plan in place to support our mission to end Parkinson’s.
Join our team to use your voice in support of federal and state public policy that advances our mission toward a cure.