16 Fox Focus | Policy
States Make Strides on Parkinson ’ s Policy
By Brenna Callahan
With 165,000 total bills introduced by state legislatures annually — about 3,300 each — and an average of 12,000 filed by U . S . Congress per session , there could be thousands of opportunities for policy change impacting funding , research and support for Parkinson ’ s disease every year .
Not only is state legislation a powerful tool for change on its own , but it also serves as an incubator for innovation , testing fresh ideas and modeling effective approaches . When state-level efforts are successful , they can inspire or inform federal programs and policies .
Recognizing this potential , MJFF amped up its policy strategy by dedicating additional state-focused resources . The effort is rooted in the belief that those closest to the problem are closest to the solution . That ’ s why community advocates work with us to educate and engage with policymakers across the country .
MJFF focused on three priority areas for state policy change in 2023 :
Establishing or Improving Parkinson ’ s Research Registries
Registries are rich data sources that help researchers , health care providers and policymakers identify patterns that deepen their understanding of Parkinson ’ s and how to treat it .
MJFF joined advocates at New York ’ s state capitol to help legislators understand why registries are so important . Barbara Zimmerman , whose husband , Jim , was diagnosed in 2007 , said “ my role as a wife has slowly changed to caregiver . I miss the partner and friend I ’ ve known for over 50 years . We need a Parkinson ’ s disease registry in New York now to make further progress on treating the disease .”
New York ’ s bill passed unanimously in the Senate but did not come up for a vote in the Assembly and will carry over to 2024 . Maryland , Missouri , Nevada and Ohio passed bills to create registries , while Nebraska — home of America ’ s first Parkinson ’ s registry — boosted funding to modernize its registry .