Denise Coley, second from left, receives a 2024 Woman of the Year Award from her state representative, California Assemblymember Gail Pellerin. Photo courtesy of Assemblymember Pellerin's office.
In this guest blog, MJFF Patient Council member and Parkinson’s policy advocate Denise Coley shares her journey to advocacy, how she's empowering others to get involved and how you can join her this summer!
When I learned I had Parkinson’s disease in January 2018, I became the third person to receive a diagnosis within two generations on my mom’s side of the family. That’s why my husband Bernard and I decided to help find possible solutions to the health care gaps and challenges associated with Parkinson’s.
We wrote letters and visited our elected officials' offices to educate them about Parkinson's disease and built meaningful relationships with health benefit organizations, Black neurologists, movement disorder specialists, therapists and social workers. Soon, we became known as Team Coley: Parkinson’s Advocates.
Our goal is to bring awareness, education, resources and research to under-engaged groups within the Parkinson’s community, empower them to become advocates and help them live their best lives. We do that by advocating for ways to address health and cultural disparities, bridge communication challenges and break through systemic barriers to better health outcomes for Black families affected by Parkinson’s disease.
We're continuing our advocacy as Congress goes into summer recess in late July and August and state legislative sessions conclude, bringing elected officials back to their communities. That’s why now is the perfect time for you to join us in raising awareness about policies that could affect the Parkinson’s community and building strong relationships with your government officials.
Five ways to advocate this summer
- Send a letter to Congress to urge them to fund key Parkinson’s research and care programs.
- Support the Parkinson’s community in your state by asking local lawmakers to prioritize Parkinson’s policies during the 2025 legislative sessions. P.S. Check out the state policy wins we accomplished together this year. Spoiler: It’s a lot!
- Engage with federal and state lawmakers by reaching out to ask for a meeting or inviting them to a support group meeting or exercise class.
- Get social by sharing your Parkinson’s advocacy story on social media using the hashtag #Act4PD.
- Sign up for MJFF’s Parkinson’s Policy Network if you haven’t already!
Save the date for a National Day of Action
Our summer advocacy will culminate with the annual Parkinson’s National Day of Action on September 17, 2024, as members of Congress return to Capitol Hill. Stay tuned for more information about how to participate!
Please visit MJFF’s Action Center to find more information, tools and resources to support your Parkinson’s advocacy, or reach out to the MJFF Public Policy team at policy@michaeljfox.org with any questions.
