16 Fox Focus | Policy
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 .
Diagnosed with Parkinson ’ s in 2020 at 40 , Laura L ’ Ecuyer , from Bakersfield , California , retired from her career in community service shortly after her diagnosis . According to Laura , a meeting with the staff of House Speaker Kevin McCarthy breathed new life into her advocacy . “ I ’ m the kind of person who speaks from the heart . I talked about what it ’ s like to live with Parkinson ’ s and why we need Congress to support work toward a cure . After the meeting , I felt like I had a new purpose . It was such a wholesome feeling to do good , be in service to our community , and advocate for what we need to be able to live with Parkinson ’ s ,” she says .
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