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The Voice from Washington – Congressional Advocacy at Home

Congressional Advocacy at Home

Christy Hahn
Assistant Director of Government Relations, PAN

In August, the Parkinson's Action Network (PAN) - joining with ambitious grassroots advocates from across the country - instituted the District Work Period Project (DWPP). The project is designed to strengthen relationships between Parkinson's advocates and their Members of Congress throughout the year and thereby increase awareness of Parkinson's-related issues on Capitol Hill.

Increasing regular communication, especially face-to-face communication in the Member's district office, helps increase the visibility of Parkinson's patients and the issues they face. After interacting with constituents, the Members of Congress return to Washington, DC, with a reaffirmed commitment to champion these issues.

Contacts in the capital itself are already a tradition, made possible by PAN's annual Forum. Each springtime, some 200 dedicated advocates attend the PAN Research and Education and Public Policy Forum to learn the latest in research and to communicate the needs of Parkinson's patients, caregivers and loved ones to their Senators and Members of Congress. The time advocates spend in Washington educating legislators and their staff members is essential, but that time is only one way to promote the needs of the Parkinson's community.

Through the DWPP, we will be taking the show on the road - building on the efforts of the Forum by encouraging advocates to meet with their legislators in their local district offices while the U.S. Congress is out of session. These so-called recess periods present opportunities throughout the year to educate Members and staff about increased funding for the National Institutes of Health (NIH), and to garner support for such initiatives as the Neurotoxin Exposure Treatment Research Pro-gram (NETRP), conducted by the Department of Defense, and the Parkinson's Disease Research and Clinical Centers (PADRECCs) of the Department of Veterans Affairs. The meetings also present valuable opportunities to bring up current legislation facing Congress, such as HR 4682, the Stem-Cell Research Enhancement Act of 2004. This bill, which is sponsored by Representatives Michael Castle (R-DE) and Diana DeGette (D-CO), would loosen the President's restrictions on federal embryonic stem-cell research.

In preparation for the start of the DWPP, PAN provided advocates with information that included talking points for the meetings, background information on specific Parkinson's research programs and centers and current legislation. Advocates across the country then received an email action alert from Laura Jane Cohen, PAN Director of Outreach, and the project began.

In addition to meeting periodically with Parkinson's advocates throughout the year, Members and staff will appreciate the opportunity to participate in various types of events. Have you considered inviting your Member of Congress to a support group meeting? Alternatively, what about attending a town hall meeting, or even volunteering in his or her office on constituency business? For example, New York advocate Lupe McCann spoke with Representative Tim Bishop (R-NY) at a support group meeting over the summer. Through that interaction she learned that Rep. Bishop had been touched personally by Parkinson's disease and was able to recruit him to the Congressional Working Group on Parkinson's Disease.

To make the best of your relationship with legislators, be sure to follow-up after each meeting. In addition to sending a brief "thank you" letter, please forward information about your meetings to PAN and complete a Congressional debriefing form on the PAN website.

Setting up meetings can be frustrating and it will sometimes be difficult to find an opening on your Member's busy schedule. Don't get discouraged. Often, the office may recommend a time to meet with the person who handles healthcare issues for your legislator. These meetings are of significant value and you should also send a follow-up thank you note.

Parkinson's advocates can use the PAN website to email Members of Congress at any time. Special software on the site allows advocates to determine not only which issues are facing the community, but also who their Members of Congress are, on which committees they serve and how they may be reached. This software is accessible by visiting and clicking on "Take Action Now." For additional assistance, or specific information on a member of congress, please contact PAN staff members Mary Richards, Director of Government Relations or Christy Hahn, Assistant Director of Government Relations.

Founded in 1991 and based in Washington, DC, PAN is the unified education and advocacy voice of the Parkinson's community. PDF uses a portion of your contributions to support PAN - $150,000 in the current year. For more information on how you can help the Parkinson's community, please visit the PAN website or call (800) 850-4726.