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RTK.NET Mail 138348 Apr 4 18:04:33 1996 Greetings! I was going to wait to respond to your message until I received a written set of follow-up tips from PAN, but my mail service has occasionally been returning mail, and my last mailing from the Parkinson's Action Network met with that sad fate. I think the first thing you need to do when a representative sends a supportiv e but non-committal response like the one you received is to call her or his legislative assistant for health and ask why. Then if you know how to respond to those concerns or hesitancies, do so on the phone or set up a meeting with that staffer or with the representative--I believe it's usually most important to meet with the staffer when the goal is to educate your rep. about the legislation, the scientific potential, and Parkinson's disease; when the goal is to be sure that each representative has personal contact with someone with PD in order to begin to appreciate the impact of the disease, then it is more important to meet with the rep. personally. If you're not sure how to respond to the concerns raised, call PAN or some of the very helpful stars in the Udall bill effort such as Jim Cordy. It's common for a representative to say she or he will look favorably upon the bill but evade the issue of co-sponsoring. It's important then to make the point that the UDall bill died in committee during the 103rd congress, and a key part of the Parkinson community's efforts to get the bill before both houses is to get as many cosponsors as possible to demonstrate that this bill has widespread support and that as one of your constituents, you are respectfully urging him or her to make that commitment. I met today with the Leg. Asst. for Labor and Human Resources for my congressman, Steny Hoyer. While he may vote for the bill if it comes before the House, he has taken a strong stand against earmarking money for particular diseases in the legislative and appropriation process, because he believes that the scientists should be making those decisions, not the legislators. I'll keep trying, but I don't expect that my attempts to persuade him into becoming a cosponsor. But I did ask what he would do in order to support greater funding for Parkinson's research if he wasn't willing to sponsor direct legislation. I received a number of suggestions which I plan to follow-up on, and I think that if others did some of these things, it could be one of many avenues to greater awareness and action: 1) They offered to raise questions I submit to them when the head of NIH testifies on the FY97 budget request. This not only insures that Parkinson's disease will be brought up in the discussion, but it also means that I will get a written response to my questions from Dr. Varmus (I hope I'm spelling his name right). These can be used in future follow-up letters reminding legislators of the importance of Parkinson's research or in letters to newspaper editors. 2) She suggested that I find out about upcoming issues, hearings, and testimonies and make appointments to meet with the staffers of other appropriate committee members, even if I could not round up a constituent to come with me. Not everyone lives as close to D.C. as I do, but others could get the 800 number for the capitol switchboard (sorry I don't have it on me) and ask to speak with the legislative assistants for health of those committee members. Letters from non-consituents are easier to ignore than a telephone conversation or a personal visit. There were other suggestions as well, but these were a couple of the strongest