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]>