Advocacy Achieves Big Wins in Parkinson's Policy

People and families with Parkinson’s can be the catalyst for policy change – and there is new evidence of that power with recent policy accomplishments. Your advocacy helps educate elected officials in Washington, D.C. and state capitals across the country about the role they play in fostering scientific breakthroughs and improving care for Parkinson’s.

2022 was a big year in advancing Parkinson’s policy priorities. Thanks to the support of tens of thousands of advocates, tangible progress is being made to support research and care issues that matter to our community. Here are a few highlights to celebrate:

• Last year, advocates helped create Parkinson’s data registries in three states – Maryland, South Carolina, and West Virginia—bringing the total to two fully operational registries, two partial registries and two coming online in 2023. These registries, which provide de-identified patient information upon diagnosis, help identify Parkinson’s “hot spots” across the United States. These localized registries also inform a national Parkinson’s data collection so lawmakers and researchers can have a clearer understanding of the impact of the disease across the country. In 2023, the MJFF Policy Team is working to introduce nine new state-based research registries,

• On a national level, the Parkinson’s community rallied together an impressive effort to support the National Plan to End Parkinson’s Act – the first-ever legislation solely devoted to ending this disease. Since the bill’s introduction in July 2022, more than 19,000 advocates sent 40,000 messages encouraging 70 representatives and 16 senators in Congress to co-sponsor the bill. The bill is now positioned with incredible strength for re-introduction in the 118th Congress this year.

• MJFF has long invested in both research and policy aimed at eliminating environmental triggers of Parkinson’s, including paraquat – a herbicide thought to increase disease risk by 100 to 500 percent. After years of advocacy, including amassing more than 100,000 community signatures on a petition, an important breakthrough was achieved: the Environmental Protection agency agreed to reconsider the evidence that paraquat causes brain damage. This could lead to protective regulations and even a ban of this toxic chemical in the U.S.

So, What About Alabama?

Members of the Parkinson Association of Alabama Executive Committee and Board, including Clarence Pouncy who is the Chair of the Governance Committee and also a board member liaison to the Michael J. Fox Foundation is currently meeting and working with the House of Representatives ad members of the Senate in Alabama to unite the federal government in a mission to cure and prevent Parkinson’s disease, alleviate financial and health burdens on American families, and reduce government spending over time. His next meeting will be with Congressman, Gary Palmer in June.

How can you help?

YOUR VOICE MATTERS!

You can use your voice to create meaningful change in Congress that will prioritize a cure for Parkinson’s. Our community is coming together to support the National Plan to End Parkinson’s Act.

The National Plan to End Parkinson’s Act is first-of-its-kind legislation that will unite the federal government in a mission to prevent and cure Parkinson’s. This legislation has monumental potential to accelerate a cure and care for those living with Parkinson’s and their families, and we need your help to get it passed.

You bring a unique experience and perspective in sharing your Parkinson’s journey, and your voice matters. Lawmakers record how many calls they get on a particular bill, especially when you explain why the bill matters to you.

When you are ready, you can call Congress directly from your phone by looking up your senator’s and representatives’ office numbers online or by calling the U.S. Capitol switchboard at 1.202.224.3121 and asking to be connected to their offices.

Source: Advocacy Achieves Big Wins in Parkinson’s Policy. Fox Focus. Michael J. Fox Foundation. Spring/Summer 2023, Pages 16-17.