Member Spotlight: Parkinson’s Action Network


The genesis of the Parkinson’€™s Action Network goes back to 1987, four years before the organization’€™s founding. That year, Joan Samuelson left a career in law after being diagnosed with Parkinson’€™s disease; she threw her might into advocating for people living with Parkinson’€™s. Four years later, PAN was born, and its successful advocacy continues today.

Parkinson’€™s Action Network

The Parkinson’€™s Action Network (PAN) is a unique organization in the patient advocacy world. PAN represents the entire Parkinson’€™s community on funding and quality of life policy priorities for those living with the disease. PAN works with other national Parkinson’€™s organizations and is the only organization addressing government programs and policies that impact the Parkinson’€™s community.

’€œWe’€™ve worked on a vision that if our community came together on policy issues, with one, singular voice, we would be much more effective,’€ said PAN CEO Amy Comstock Rick, JD, who became a Research!America Board member in March. ’€œReally in the last 10 years, we’€™ve been able to effectively achieve that mission so that PAN is the only organization in the Parkinson’€™s community that works on policy issues, even though we have a number of national organizations.’€

Augmenting its policy expertise is PAN’€™s robust grassroots network, with directors and assistant directors at the state level and volunteers in key congressional districts. But, Rick points out, PAN does not maintain its own chapters; rather, consistent with its goal of unification, it relies on the chapter structures of the other national organizations in order to reach the community.

’€œPAN does advocacy work through our grassroots leaders. These PAN volunteers are also leaders in their communities, working with their local Parkinson’€™s organizations,’€ Rick said. ’€œWithout these advocates, the Parkinson’€™s community couldn’€™t accomplish all of the work we do each year. These advocates are the core of PAN.’€

The chance to network beyond the community and beyond Washington are key reasons for PAN’€™s membership with Research!America.

’€œOur structure is so unique in Washington, the goals of Research!America are really the same goals in terms of a unified voice. Research!America gives us not only the opportunity to work with other disease organizations,’€ Rick said, ’€œIt also is a great way for us to work with other members of the community who have the same ultimate goal, which is getting therapies out there, even if it’€™s from a different vantage point ’€¦ You have to get to know people and see things from their perspective, and having an organization like Research!America that brings us together really adds value to that.’€

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Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor