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The Voice From Washington

PAN and Advocates Prepare for 2006 Forum
Christy Hahn

On February 19-21, 2006, the Parkinson's Action Network (PAN) will host its Research and Education & Public Policy Forum, as well as the Louis Fishman Advocacy Awards Dinner, at the Holiday Inn on the Hill in Washington, DC. These events will offer members of the Parkinson's community the year's best opportunity to be updated on the latest scientific advances in research and to interact with one another. The Forum also provides advocacy training to help prepare attendees for speaking with their elected representatives about their personal experiences with Parkinson's and telling them why investing resources in the quest for a cure is so important.

On Sunday, February 19, participants will learn about Parkinson's research conducted at the centers that are known as the Morris K. Udall Parkinson's Disease Research Centers of Excellence. The Udall Centers are funded by the National Institute of Neurological Disorders and Stroke (NINDS) to pursue various pathways to a potential cure for Parkinson's. Following the presentations, PAN will conduct a policy briefing to explain the importance of the program and the need for continued support from Congress.

The afternoon will feature a panel of scientists who conduct Parkinson's-specific research under a program funded through the Department of Defense (DoD). The venture, known as the Neurotoxin Exposure Treatment Research Program (NETRP), is critically important for investigating potential causes of Parkinson's and other neurological diseases. Research funded through NETRP also includes study of the effects that environmental toxin exposures have on military personnel. Americans in military service are often exposed to a wide range of chemicals, radiation, external stressors and other toxins which can put them at risk for developing neurological diseases like Parkinson's. PAN will offer an update on what actions Congress can take to ensure that this research continues. This day will also include training for advocates at all stages of experience, from beginners to advanced practitioners.

Monday's schedule will begin with a presentation on another important issue for the Parkinson's community: embryonic stem-cell research. Some of the nation's leading researchers will explain where the science currently stands, as well as its potential. Policy experts will then lead a discussion on how the Parkinson's community will work with advocates from other disease groups and coalitions to move embryonic stem-cell re- search forward. Other featured topics for the day will include an examination of regulatory issues affecting PD drug development, including the processes of testing and approval of new and potential Parkinson's treatments.

The day will conclude with presentations by organizational and government leaders on their role in serving the Parkinson's community. Representatives from the national PD organizations (including PDF) will join in a panel discussion about the unique role that each group plays in pursuing a cure for Parkinson's disease and supporting the community of people with Parkinson's and their families. On another panel, staffers representing members of the Congressional Working Group/ Caucus on Parkinson's Disease in the Senate and the House of Representatives will explain the function of this group in Congress. They will also discuss prospective legislative activities related to PD in the 2006 session.

The final day will be the culmination of two days of learning about science, public policy and advocacy. Armed with personal experience and new-found knowledge, hundreds of Parkinson's advocates will travel to Capitol Hill and ask their Representatives and Senators to support specific legislation that will benefit Parkinson's patients and their loved ones.

The Forum will conclude with an advocacy awards dinner, including the presentation of the Louis Fishman Award for Outstanding Advocacy and the Murray Charters Award for Outstanding Service to the Parkinson's Community. Robin Elliott, Executive Director of PDF, will serve as Master of Ceremonies.

For more information about the Forum or to register online, please check our website at www.parkinsonsaction.org. PAN will offer a limited number of scholarships for advocates with financial limitations; details on this program and the scholarship application are available on the PAN website. The deadline to apply for scholarships is January 20, 2006. PAN has scheduled the Forum for the three days immediately preceding the World Parkinson Congress so that Forum attendees can be in Washington, DC for both events.

Christy Hahn is the Assistant Director of Government Relations 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 an important part of your contributions to support PAN - $150,000 in the current year. For more information on PAN and how you can join, visit their website or call (800) 850-4726.