^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine land of lighthouses 12 deg. F Crisp
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Dear List,
BAD night --- so here I am at 6:25 AM.. I am NOT ready for Valentine's
Day. I wish I could feel differently. SO PLEASE try to read this--I am
sweating BUCKETS over this.....
I am so depressed about the Udall Bill--it is just sitting there not
funded--is all our work going
to go DOWN THE DRAIN??
10:45 AM (continued, 2 medication cycles later):
I have so many feelings this morning. First I feel wiped out
encouraged but exhausted and seeking to rally us PWP's for WORLD
day(April 11). Then my metabolism does a double-flip more astounding than
Greg Louganis, so I DON'T KNOW FROM ONE DOSE TO THE NEXT what will
happen to me.
I am extremely saddened and ANGRY that we're not all together.
PAN's Joan Samuelson is amazing, but somehow, I can feel the rift
between her and Jim Cordy. Why?? Is it SEXISM? Jealousy? WHY are
these people COMPETING with each other? What the =HELL= is going on??
I say that because I feel that the Miami group means VERY well, but
that it must NOT be linked to the NPF, or it is doomed.
To Jim Cordy's credit -- i can't say this loud enough -- it is he
who introduced me to our wonderful list. And talking to me, he seems
like a really sincere guy.(WITHOUT the NPF, that is).
So here is my little morsel of an idea on a better way than the
12-member Alliance.
How about a National Network of Support Groups, whether linked to the
APDA, NPF, UPF, or WHATEVER? With the Parkinson's Action Network (Joan
Samuelson and coworkers) to get on with the business of the Udall Bill
leadership, maybe the establishment will get UNGLUED, and the
$100,000,000.00 (that's ELEVEN zero's--one hundred MILLION dollars!)
won't be LOST FOREVER.
I can feel it happening. Didn't Dale Severance talk about a coast-to
coast walk? How about if the American join the Canadian groups (and are
there any MEXICAN groups??)
Incidentallym here is how Mr. Dolezal closes his message in Tucson:
"Patients and caregivers, we look to the men and women doing research
to find the cure. I don't know if that is realistic. But I am going to
believe that it is, and give them all the support I can."
I agree completely, except for one thing, Bob. We PWP's must not
only "look to " the researchers. WE must PUSH for it to happen.
WE must say what research we want. WE must prioritize. WE must decide
if we want brain surgery research, public education, clinical outreach,
adult day care centers, genetic, cellular and biochemical research.
The opportunity is SLIPPING AWAY for unified action. And we need UNIFIED
leadership or the pwp and cg world will see the Udall BIll LOST!
Sheeeesh!
I still think the PD list is the MOST powerful grassroots forum
around--and the most knowledgeable.
Let's NOT let the Udall money slip a-- w ---a-----y !!
Yours,
Ivan Suzman
