-----Original Message-----
From: Jay Henkelman <[log in to unmask]>
.......> As a group, we always have been.........and in
>essence still are........a lumbering-bumbling giant at best! And until
>very recently...
OH REALLY? UNTIL VERY RECENTLY? WHAT THE HELL HAS CHANGED? VIRTUALLY
EVERY OTHER DISEASE CONTINUES TO RECEIVE MORE, AS MUCH AS IN EXCESS OF 4000%
MORE, VIA THIS BULLY, AS YOU DESCRIBE IT. IT IS ONE THING TO "MENTION"
PARKINSONS DISEASE ALONG WITH A COUPLE OF OTHER RELATIVELY UNDERFUNDED
DISEASES. IT IS QUITE ANOTHER TO ACTUALLY MAKE SOME CHOICES AS TO THE
FAIRNESS OF THE WHOLE INEQUITABLE MESS.
I'm with you, Jay. We need to tighten the screws by lobbying our
congresspeople to open the purse strings and spend some serious money on US.
President Clinton unilaterally, with no support from our allies, ,just
wasted* $1.5 billion worth of our missiles attaching Iraq. We should be
demanding......what? I propose we demand a nice round $1 billion!!!! You
want notice, recognition? This will get us noticed by the real press. We
have to get in Society's face & tell them it is not fair to leave us behind
like this. $1 billion? We tell them it is still little more than half what
you are spending on curing another wholly voluntary disease - every year!
Pointing this out will NOT hurt AIDS, not one bit! (Save your threats, boys,
please.) But it will help us.
Who's going to do this - lobby Congress for $1 billion? I would say
forget about the professional PD groups. They have no sense of urgency.
Who's going to start this if not this
burned up, doped up group of 1600? I can no longer
speak and I can walk no more than 5 feet. I've been writing letters.
"We" need to get angry & do more. Visiting daytime talk shows for more
happy
talk was fine. But more of that is not going to do it.
We have major, major budget surpluses coming up - and we crow over the
fact that our disease was mentioned in a speech. Pretty pathetic.
Or maybe PD isn't so bad. Heck we don't die from it. do we.
*"Wasted:" I understand that our attack has not hurt Saddam's control or his
popularity much.
>an easy target for the neighborhood bully (NIH) to grab our share
>of the "candy" and run! The time has come to throw the "raw meat" of truth
>out and go for the "big picture"! It all comes down to the color of green.
>The equation for attracting research funding is simple. The amount of
>funding made available will be directly proportionate to the degree of
>awareness/urgency we create. Our "happy face" will bring us our cure in
>maybe 10-12 years regardless of what we do. Where we can make a huge
>difference is by making sure that we ride the current "wave". Tighten the
>screws any and all ways possible. Our efforts could translate into a
>savings of 5 to 7 years!!! That would be phenomenal!!!
B. Bruce Anderson (53, 5)
Schooley's Mtn., NJ
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