Parkinson's Action Network: May-June 2013

Parkinson's Action Network: May-June 2013


The genesis of the Parkinson's Action Network (PAN) 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 advocacy continues today.

PAN is a unique organization in the patient advocacy world; it 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 community.

"We'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. "Really 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 to reach the community.

"PAN does advocacy work through our grassroots leaders," Rick said. "... Without 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.

"Our structure is so unique ... 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, "it 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 ... 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."


Media Contacts

Suzanne Ffolkes
VP Communications

Anna Briseño
Senior Manager of Communications

If concerted, long-term investments in research are not made, America will lose an entire generation of young scientists.
Brenda Canine, PhD; McLaughlin Research Institute, Montana