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The Voice from Washington

Playing Your Role as a PAN Advocate

Monica Billger

A regular feature of PDF's News & Review is The Voice from Washington, written by the staff at the Parkinson's Action Network (PAN). We at PAN would like to take this column to introduce ourselves, or re-introduce ourselves, to those of you who may not be familiar with what we do and why.

It all started in 1991, when a lawyer from California named Joan Samuelson, who was living with Parkinson's, recognized that her condition was not receiving enough funding or attention from the federal government. She decided that an organization was needed to represent people with Parkinson's throughout the country. Since then, PAN has created a national network of dedicated advocates who have made extraordinary progress for the Parkinson's community. PAN advocates have greatly increased both our presence on Capitol Hill and federal investments in Parkinson's research, but fully realize that - as the cure remains elusive and the need for better treatments continues - there is much left to be done.

As the unified advocacy voice for the Parkinson's community, PAN is dedicated to maintaining and growing its strong national grassroots advocacy program. The primary responsibility of a Parkinson's advocate is to educate his or her elected officials and community leaders on legislative issues that affect people with Parkinson's disease and their families. With each contact, advocates build critical support for the Parkinson's community as well as for the PAN mission. PAN's approach to grassroots advocacy is three-tiered. For the first two tiers, PAN appoints dedicated volunteer advocates with the requisite skills to serve in the roles of State Advocacy Coordinator and Congressional Advocacy Coordinator. The third tier comprises individuals who actively volunteer in varying degrees of advocacy for the Parkinson's community. These grassroots efforts are supported by PAN's professional staff in Washington, DC, all of whom have significant government experience.

State Advocacy Coordinators serve as PAN's primary contact in each state and are responsible for directing Parkinson's advocacy efforts statewide. Congressional Advocacy Coordinators are responsible for managing PD advocacy within their Congressional district as well as working and communicating directly with State Advocacy Coordinators. The job of both sets of "officials" is to educate their elected representatives on Parkinson's-related issues.

State and Congressional Coordinators raise awareness by speaking to Parkinson's support groups, medical schools, hospitals and any other forums that have relevance to community education and awareness. In addition to encouraging others to become involved in advocacy, Coordinators often serve as a resource for Parkinson's legislation within their own communities. Recent examples include advocating for a local Parkinson's Awareness Day (Bob Tauchen, North Carolina), reinstating a statewide registry for people with PD (Monnie Lindsay, Nebraska) and developing local events to raise awareness (Kay Jenkins, Georgia, with Parkinson's in the Park).

To help the grassroots effort, PAN distributes Action Alerts, which are federal and legislative updates via email. These Action Alerts encourage people to respond to a timely legislative issue that affects upcoming public policy decisions. One may ask supporters to contact their Member of Congress with regard to proposed legislation; another may urge them to write a "letter to the editor" about a specific topic facing Congress. To keep Coordinators and advocates continuously well-informed, PAN also provides educational materials including advocacy handbooks, sample letters, fact sheets and the PAN newsletter.

Remember, when you become an advocate, you become a community leader. Being an advocate means establishing a working relationship with your elected officials by telephone, email and/ or personal visits. It is your elected officials' job to listen to you, but they will only listen if you speak up, speak straight and know your facts.

Another thing to remember is that advocacy starts at home. One of the best ways to use your voice for change is to encourage people in your community to support you. Motivate your family, friends and support group in your advocacy efforts. Taken individually, each action may not seem like much, but over time you will discover that your efforts add up to a unified voice calling for change.

All PAN advocates are volunteers. If you would like to learn more about what you can do as an advocate, contact Monica Billger, PAN Director of Outreach, at mbillger@parkinsonsaction.org, or visit www.parkinsonsaction.org.

Monica Billger is the Director of Outreach at PAN. Founded in 1991 and based in Washington, DC, PAN is the unified education and advocacy voice of the Parkinson's community. PDF uses part of your contributions to support PAN - $150,000 in the current year.