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Dear Ms. Hartman, First of all, thank you for contacting your Senators and Representative regarding Parkinson's research funding. Secondly, thank you for forwarding Congressman Packard's response. If it's not too much trouble, we always like to have hard copies of the letters for our files. Our mailing address is at the end of this message. Every contact with a member of Congress is an opportunity for additional contact in order to build a relationship with that Member and/or their staff -- which should always be one of our goals as advocates. So I would strongly urge you to write a follow-up letter thanking him for his response, and especially for his past support of Pd-related initiatives. In your letter you can also help educate him and his staff by correcting any inaccurate or out-of-date information he included in his letter. For instance, he states the total costs of Pd as $7 billion annually. There are two very credible sources (Dr. Ole Isacson of Harvard Univ. and a recent cost analysis by the Parkinson's Disease Foundation) which put the figure at $25 billion per year. I think it's worth pointing out to Packard -- a fiscally conservative Republican -- the true fiscal costs of Pd. Packard's letter mentioned the funding authorized by the Udall Act, but you should remind him that that money has yet to be appropriated. As a member of the House Appropriations Committee Packard is in a position to influence the level of Pd research funded through the NIH, and you should again ask him to do so. I would hope that the prospect of investing $100 million per year in research in order to save $25 billion per year would appeal to him. One concrete thing he can do is write a letter -- or simply speak -- to Rep. John Porter, Chairman of the House Labor/HHS Appropriations Subcommittee. Packard undoubtedly knows Porter well, as they have sure worked together for many years on the Appropriations Committee. He can mention to Porter how important Pd research funding is to him, and how he'd really like to see the mandate of the Udall Act fulfilled by designating specific increases in Parkinson's research. (We have more detailed information about the exact increases we'd like to see, and I would be happy to provide that to you.) His last paragraph is pretty boilerplate stuff: "Please be assured that I will keep your views in mind during this year's budget negotiations." The truth is it's really up to us -- and to you -- to ensure that he does keep our views in mind. How? By persistent contact, building a relationship, and always advancing the level of discussion. By that I mean you need to build on previous contacts, get into more detailed information about Parkinson's disease and our research and legislative goals, and always ask him to raise his level of commitment to helping our cause. It's hard work, but it's very important and can have a big impact -- and we are here to help you, so please don't hesitate to ask. Thank you again for contacting your legislators and advising us of their responses (or lack of responses). We look forward to working with you. Sincerely, Michael Claeys Policy Coordinator [log in to unmask] Parkinson's Action Network 840 3rd Street Santa Rosa, CA 95404 (800) 850-4726 - voice (707) 544-2363 - fax --- Kelly Abbett <[log in to unmask]> wrote: > Thanks so much for your efforts - and yes, it would > be very helpful if > you could cc PAN on both your letter and the > response that you > received, and for others to do so on any similar > advocacy efforts. > > Kelly Abbett > > Parkinson's Action Network > 840 Third Street > Santa Rosa, CA 95404 > tel 800-850-4726 > fax 707-544-2363 > > --- Joan Hartman <[log in to unmask]> wrote: > > As requested by PAN, I recently wrote to my > > Senator and House Rep....expressing support for > the > > research for Parkinson's disease....I have had no > > response from Senator Feinstein but have had a > > response from Rep. Ron Packard.....the first > > paragraph thanked me for writing...second > paragraph > > discussed PD afflictions for 1.5 million Americans > > and cost of $7 billion annually. and that it was > > important that these efforts are properly > > funded....Third paragraph started with "As you > know, > > ....HR 1260.....signed and into law in 1998, > > authorized appropriation of up to $100 > > million......etc....... > > fourth paragraph discussed his support over the > > years for provisions emphasizing NIH funding be > > allocated to Parkinson's disease.....Fifth > paragraph > > stated, "Please be assured that I will keep your > > views in mind during this year's budget > > negotiations. In the meantime, please visit my > > Internet web site at" ......where you can sign up > > for his newsletter. Joan Hartman > > PS...are we to keep our responses or forward them > to > > PAN??? > > > > _____________________________________________________________ > Do You Yahoo!? > Free instant messaging and more at > http://messenger.yahoo.com > _____________________________________________________________ Do You Yahoo!? Free instant messaging and more at http://messenger.yahoo.com