On Saturday, March 29, the California leadership team  of PAN held the California Parkinson’s Advocacy Summit, which brought together people living with Parkinson’s, local organizations, researchers, and clinicians to discuss opportunities to engage in advocacy within the state of California.
The daylong event started with a brief presentation by Jennifer Sheridan, PAN’s director of policy, on PAN’s work at the federal level and was followed by several panels highlighting how those federal issues manifest within California. Topics of discussion included Parkinson’s research funding in California, research on environmental risk factors for Parkinson’s, the California Parkinson’s Disease Registry , and the expansion of telehealth within the state. The 55 participants also heard about clinical trials, specialty provider access in new models of care, and work by the California Institute for Regenerative Medicine  on Parkinson’s.
The keynote address, “What Parkinson's Has Done for Me,” was by Bennett Kayser, board member of the Los Angeles Unified School District Board of Education. After giving an uplifting speech about his journey with Parkinson’s disease and work to educate children about Parkinson’s disease and public health, he presented a Parkinson’s Awareness Month proclamation from the Los Angeles Unified School District Board of Education.
The aim of the meeting was to discuss pressing issues impacting those living with Parkinson’s in the state and launch the California Parkinson’s Coalition, a network of dedicated advocates that will work together throughout California to enable access to the best care and treatments today and a fast track toward a cure for tomorrow. The Coalition aims to be a resource to connect people to support services, Parkinson’s care specialists, clinical trials, as well as support the Parkinson’s community in California through advocacy efforts.
To learn more about these efforts or to get involved with PAN in California, please contact Sarah King, PAN’s Southern California State Director, at [email protected] .
Date originally posted: April 4, 2014.