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You Spoke, Policymakers Listened: 2017 Advocacy Highlights

You Spoke, Policymakers Listened: 2017 Advocacy Highlights

Each year, we can count on our community to speak up for people living with Parkinson's disease (PD) and their loved ones, and 2017 was no exception. As highlighted in our 2017 Research Year in Review, from January to September, nearly 13,000 advocates -- representing all 435 congressional districts across 50 states -- contacted their lawmakers more than 54,000 times to voice their opinions on research funding, health care access and more. And since the report was sent to print, you called and emailed your legislators an additional 13,000 times!

We want to thank everyone who took action in 2017. By telling policymakers what is fundamentally important to those who know Parkinson's disease intimately, you helped shape their decision-making.

This year, our community:

  • Advocated in Washington. In February, the Foundation hosted more than 200 Parkinson's patient and care partner advocates, including Michael J. Fox, from 43 states at its first Parkinson's Policy Forum in Washington, D.C. Attendees held nearly 200 meetings with members of Congress urging them to support policies that safeguard federal research funding and access to care. Broadening the reach of the Forum to those who could not attend in person, the Foundation streamed several panel discussions live from D.C., which have received more than 45,000 views to date. 
  • Spoke Out for Parkinson's Care Partners. A major focus of congressional meetings during the Forum was the RAISE Family Caregivers Act, which directs the government to create a national strategy to better support care partners. Advocates explained the critically important role care partners play in their loved ones' journeys with PD and asked legislators to provide these individuals with more training and resources. After the event concluded, our community continued to push for this bill's passage in calls and emails to officials. Now, the legislation has secured support from both chambers of Congress and will soon be sent to the president's desk to be signed into law. Without your efforts at the Forum and throughout the year, this would not have been possible. 
  • Protected Parkinson's Research at the Department of Defense. Earlier this year, you told lawmakers about the importance of medical research and helped preserve the Parkinson's Research Program (PRP) at the Department of Defense. When Congress introduced provisions that would have severely restricted the PRP, our community sent thousands of emails to legislators telling them to remove these items, which ultimately were excluded from the final bill.
  • Ensured Tax Reform Served the Needs of People Living with Parkinson's. Throughout November and December, you sent elected officials over 7,500 emails asking them to craft a tax reform bill that supported people living with Parkinson's and other serious diseases. Specifically, our community urged the removal of language that would have made cuts to Medicare, eliminated the medical expense deduction and increased taxes for PhD students in the field of science. The latest reports indicate these provisions were left out of the final bill.
  • Safeguarded Access to Care. As Congress considered reforms to our health care and insurance systems, you spoke up for the needs of our community. Advocates contacted their lawmakers over 34,000 times on this issue, explaining the importance of accessible, affordable care for people with pre-existing conditions, including PD. You joined with hundreds of other patient organizations to ask officials to strike down language that would have raised costs and limited care options. After much debate, Congress was unable to secure the votes to pass a reform package. 

Advocacy Will Continue Strong in 2018
You took action on a number of other policy issues in 2017 that will continue to play out next year. Congress soon must set 2018 federal spending levels, including funding for the National Institutes of Health, the largest public funder of Parkinson's research, and the National Neurological Conditions Surveillance System, which will gather information on how many people are living with PD. Patients, care partners and researchers have already sent their lawmakers over 15,000 emails on this topic. Your voice on this issue will continue to be essential as funding is finalized.

We also will continue to urge the Environmental Protection Agency to address substances linked to Parkinson's disease risk. This summer, the Unified Parkinson's Advocacy Council launched a petition to ban the use of the herbicide paraquat, which is associated with PD. If you haven't done so, join the 4,200 individuals who have already signed the petition.

Thank you again for all you've done for the Parkinson's community. You can browse our advocacy resources and take action at any time at

Read the Foundation's 2017 Research Year in Review to explore more highlights.

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