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Dear List Members, The information contained within Mike Claeys' message is most important! Please read it and share it with your support group and anyone who would like to participate in a truly unique experience. You can call Mike at: 1-800-850-4726 to ask questions. You can also send an email to: "Parkinson's Action Network" <[log in to unmask]>, or send a fax : 1-707-544-2363. DO IT NOW!! Preparing for the 1998 Public Policy Forum Final details on speakers and the Forum agenda are being concluded right now. To help you prepare to attend, note the following: · Forum Agenda The Forum opens with registration, Parkinson's community member introductions, sharing and social hour on Sunday, June 14th from 4:00-7:00 p.m., and concludes on Wednesday, June 17th at 12:00 noon. (Many Forum participants schedule or join others on additional Congressional visits on Wednesday afternoon following the formal agenda -- see below). · Travel Participants are responsible for their own travel arrangements, and are encouraged to make reservations as soon as possible-airfares tend to be cheaper the further in advance they are made. · Accommodations The Forum will be headquartered at the Hotel Washington, 15th Street and Pennsylvania Avenue, N.W., Washington, DC. Special room rate* for Forum participants is $125 per night-this price includes a buffet breakfast following each night you stay, and there are no room taxes. This rate is available beginning Saturday June 13th and applies throughout your stay at the Hotel Washington. Rooms at the Hotel Washington can be reserved by calling Washington DC Accommodations toll-free at 800-554-2220. Simply mention the Parkinson's Action Network, and the operators will make your reservations for you. Please make your room reservations no later than Friday, May 29. Washington DC Accommodations is a hotel booking service and at your request will provide information on alternate hotels and rates in the DC area. Because of the special rate*, payment for all rooms is to be made to the Parkinson's Action Network. Full payment in advance of the Forum is greatly appreciated. Payment may be made by check or credit card-call the Network at 800-850-4726 for credit card transactions. (*June is prime tourism season in Washington, DC, with high room rates throughout the area. This is a specially negotiated and subsidized rate, underwritten by the Network and the Forum's sponsors.) · Meetings With Legislators Tips for Scheduling Congressional Appointments: Tuesday afternoon, June 16th, is set aside on the Forum schedule for people in the Parkinson's community to meet with their Senators, Congressmen, and congressional staff. Following are the steps to take. We will be happy to help - just call us with questions. 1. Deal with the Member's scheduler. Call the Congressman's/Senator's office and ask to speak to the "Scheduler", who handles the Member's schedule. If you can fax your request (Attn: Scheduler) it usually saves time and effort. PAN can provide you with Members' fax numbers. Request a call back. If you don't hear in one or two days, call again to follow up. 2. Details. Tell them who you are, where you're from, why you'll be in DC, when you'd like an appointment and what you'd like to talk about (Parkinson's research). In your initial contact, tell them Tuesday afternoon, June 16th from 2:00-5:00 p.m. is when you'll be most available (most appointments last about 20-30 minutes), Wednesday afternoon, June 17th from 2:00-5:00 p.m., or all day Thursday is also available if you can stay in town after the formal agenda is completed. 3. Staff contacts are important, too. Always try to meet with the Member, but if meeting with a staffer is the only option, you should gladly take it. Ask to speak with the legislative assistant handling the NIH and medical research. 4. To reach any Senator or Congressmember, call the Capitol switchboard at 1-202-224-3121. The operator will answer by saying, "Capitol," then ask for the Member's office and they'll connect you. · Letters/Petitions By attending the Forum you are representing thousands of others living with Parkinson's. One way to demonstrate this fact is by gathering letters and petitions (see enclosed samples) signed by your family, friends, neighbors, support group members and others in your community. Take these letters and petitions with you to Washington, and we will work with you to present them to your Representative and Senators when you meet with them. · Media Working with your local media can raise public awareness about Parkinson's and help deliver our community's message to your federal legislators. All elected officials are keenly aware of the media coverage in their home state or district. Take advantage of this by contacting your local newspaper or television station and alerting them of your upcoming trip to Washington in support of greater Parkinson's research funding. Work with the Network for background or statistical information to add to the story. The Network can also arrange photographs or videotape of your meeting with legislators that will add to your story. Upon returning home, follow up with the reporters about your experiences in Washington. If no story is run, you can always submit an editorial or letter to the editor supporting Parkinson's research funding and telling your own story. (Instruction and samples will be provided during the Forum.)