Hello, I thought I'd share the following announcement that I found on the MGH Forum. I hope that you will all try to get involved in advocacy in some way, even if you don't attend the forum in June. It is our lives that is at stake, and I feel that empowering oneself to fight for our future is a very rewarding and fulfilling experience. I will also share a piece that I wrote for our regional support group organization's quarterly newletter (PPSG, Peninsula Parkinson's Support Groups). The Parkinson's advocacy movement has made enormous strides in recent years. This success is the result of understanding how public policy decisions are made, promoting the promise of research, and mobilizing a national network of advocates. The Parkinson's Action Network's annual Public Policy Forum provides advocates the knowledge and tools to effectively focus national attention on Parkinson's disease. The Forum is the only event in the country that trains and empowers advocates on issues surrounding Parkinson's disease. For the past six years, Parkinson's advocates from across the country have gathered in Washington, DC to hear the latest developments in Parkinson's research and advance their knowledge of public policy. This year's Forum will offer a wide array of plenary and workshop sessions to provide current information on the legislative agenda and priorities of the Parkinson's community. FORUM GOALS: TRAIN Parkinson's advocates to fight for increased federal funding for Parkinson's research and other important public policy changes DEVELOP an organized grassroots advocacy network that can mobilize on behalf of the Parkinson's legislative agenda RAISE the visibility and put a human face on Parkinson's disease for lawmakers and the public HELP keep pressure on Congress to make public funding for Parkinson's research a top Congressional priority for fiscal year 2001 and beyond FORUM HIGHLIGHTS: CAPITOL HILL briefing by leading scientists on the promise of Parkinson's research PLENARY session on "Legislative Priorities and Goals for Funding Parkinson's Research" PLENARY sessions on the exciting Parkinson's research program at the Department of Defense WORKSHOPS on strategies for effective lobbying, building a grassroots movement, Congress and the legislative process FISHMAN AWARDS DINNER honoring outstanding advocates LUNCHEON with syndicated columnist Jack Anderson ANNUAL Parkinson's Lobby Day on Capitol Hill To receive a Forum registration packet, please call the Parkinson's Action Network at 800-850-4726 and ask for Kathy. -------------------------- WHY BECOME AN ADVOCATE? I went to Washington Last June to hear the top scientists present their current work, the latest in exciting research for Parkinson's Disease, and to learn about policy issues, the process and skills of lobbying, the process of passing legislation, and how funds are appropriated. I was nothing short of "electrified;" I've been an enthusiastic advocate ever since, spending lots of time: brainstorming with other advocates, disseminating information and news to my region here in the Bay Area, and other Western and California locals, writing letters to the editor on advocacy and PD awareness, writing, calling, e-mailing, faxing, and visiting Senate and House Congressional Representatives locally, at their offices and town hall meetings, and in Washington, as well as getting others to do some of the same. There is a lot to do, but I find it rewarding, exciting, yes, frustrating, but intensely interesting. Why? Because it has been declared by the top researchers from across academia that Parkinson's Disease is the closest to being cured of all the neurological diseases. Because I, and advocates like me, want to speed up a cure for Parkinson's. Because I'm the third generation in my family to get PD, and because I don't want my son, or anyone else's children to get PD. Because there is still very little Parkinson's public awareness and knowledge about PD, while many misconceptions about this devastating disease still exist. For example, Parkinson's occurs entirely in people over 60. Actually, people get PD as young as 8, and as many as 40% are under 60, and approximately 30% are under 50. If you have a reason to participate, visit the PAN web site to find out how to get involved, or call me if you wish. You can do it. We can, we do, and we will advance a cure for PD. Please visit the PAN web site: http://www.parkinsonsaction.org to get first hand information on what PAN is about, materials that support advocacy locally, the annual Public Policy Forum held in Washington every year, and much, much more. The following passages are from PAN's web site: The Parkinson's Action Network's Seventh Annual Public Policy Forum Mark your calendar now for June 25-27, 2000! The Parkinson's Action Network's Annual Public Policy Forum provides advocates the knowledge and tools to effectively focus national attention on Parkinson's disease. The Forum is the only event in the country that trains and empowers advocates on issues surrounding Parkinson's disease. For the past six years, Parkinson's advocates from across the country have gathered in Washington, D.C. to hear the latest developments in Parkinson's research and advance their knowledge of public policy. If you are interested in attending Forum 2000, please call the Network at 800-850-4726 and we will send you the Forum registration information as soon as it is available Registration packets and more information about the Parkinson's Action Network Seventh Annual Public Policy Forum will be available soon. We want you to be there with us! There are many opportunities for Parkinson's advocates to learn, be inspired, visit with their representatives in Congress to let them know what we need to secure a better future for those affected with Parkinson's disease. Help us move the issue of Parkinson's disease from your communities into the halls of Congress. See you in June!. -- Charlotte A. Mancuso *************************************************** For advocacy, medical, and other PD-related material, go to: http://www.onelist.com/subscribe/CurePD-NorCal