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hi all At 07:21 1999/07/06 -0700, mary yost the most wrote: >There are so many things going on, it's a challenge for us to choose where to put our limited personal on-time energy to best use. Off the >top of my dopamine-challenged head, here is a list. I'm writing it >mostly for myself, to figure out what to do next. Maybe you could >add your thoughts, especially those of you who live outside the >United States: > >the Stick: Parkinson Action Network's steady campaign for the Udall >Bill, with funding for projects focussed directly on Parkinson's >research, requiring our pressure & persistence in making sure the >funds are allocated for that purpose. > >the Carrot: Parkinson Alliance's scrambling for Pennies for Parkinson >and other fundraisers for seed grants to develop attractive projects >which the NIH will be compelled to fund. > >the Big Picture: any effort to increase funding for medical research >in general. I applaud Rita Weeks for bringing up the value of basic >science. Morton Kondrake's push to double the NIH funding supports >that. Is there truly some hope that we baby boomers will make that >wish come true? > >Knowledge is Power: the anecdotal information that Perry Cohen >requested about exposure to environmental hazards > >the Unsung Heroes: support networks, whether independent or connected >to the national organizations, for the daily needs of people coping >with Parkinson's Included are the social workers at the information >and referral centers who deal daily with conundrums that would cross >our eyes. > >the Spotlight: the media-savvy and media-ready who increase our chances >for focussed research and for understanding from the public. An example >is the recent newspaper interview with Margaret Tuchman, a modest, >self-effacing person who allowed her privacy to be invaded in order >to spread PD awareness. Another example is Michael Jay Fox's "coming >out". If he does no more than what he's done to date, he's already >raised awareness more than anyone in history, while putting his career >at risk. > >Squeaky Wheel: a "phone tree", with at least 7 people in each >Congressional district (the way every powerful group from the Sierra >Club to the National Rifle Association gets things done). When anything >comes up (such as a PD postage stamp idea), we should be effective >without much effort. PAN has been working on this for over a year. > >Tilting at Windmills: encouraging the national organizations to unify >or at least cooperate , or, as we say in LA: "Can't we all just get >along?" The Unity Walk deserves support because they persist so >generously, knowing how long this might take. > >This unfinished business would seem daunting to the point of causing >paralysis if it weren't for people like Jim Cordy and Joan Samuelson -- >our best-beloved zealots -- who shake things into perspective. They >challenge us with the question: "What have you done today that is as >important as working towards finding a cure for Parkinson's?" > >a personal To-Do List evolved from the list above: > >pressure Congress to fund the Udall bill = contact my >representatives health issues assistant >(House switchboard 202-225-3121, >Senate switchboard 202-224-3121) > >raise money for seed grants = find more outlets for the Pennies >jars; help with the Oxnard Center's yard sale > >fund the database effort that has been named for Morris Udall = >send a check to NPF, earmarked for the Udall database > >contribute to Perry's toxic exposure study = ask him for his deadline >and write a draft that my older brothers could check for accuracy > >improve communications = "publish" a calendar of all PD events >in the LA area > >create a phone tree = throw a little party for all the people with >Parkinson's in my own district (Waxman's) to see if they'll sign on >as links in the chain > >Time frame to complete these action items: one step and one day at a >time -- aiming for 6 weeks from now. Every day that I spend less time >reading the funnies that doing some "Udalling" will be at least an >OK day. > >mary yost <[log in to unmask]> this is considered poor 'netiquette' by some but so be it: wow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! janet janet paterson 52 now / 41 dx / 37 onset snail-mail: PO Box 171 Almonte Ontario K0A 1A0 Canada website: a new voice <http://www.geocities.com/SoHo/Village/6263/> e-mail: <[log in to unmask]>