Hi Bruce--and listmembers,
I'm back from a week's absence from the list. It allowed me time to
tend my tomatoes and perennials.
It also gave me a chance to think about how very angry I am that our $100
million Udall LAW is STILL unfunded!!
Thank you all for the stimulating discussion of our Udall LAW. Today I
called the legislative aides in charge of health policy for Senator Reed
of Rhode Island, Senator Snowe of Maine and Representative Baldacci of
Maine. I called each of them in their Washington offices.
I leaned over the speakerphone, and used every ounce of vocal cord I
could muster. My voice is getting slurry and soft, so I had to speak so
loud that I shook, just to compensate enough to be heard.
I explained that I have reached the point of fear, after two separate
9-1-1 calls this week. I am alone in my house at night until August 15,
and I just can't change that. I and NOT doing well-I am exhausted-it
comes in waves......and I have struggled not to have panic attacks.
I asked each of the health policy aides if an AMENDMENT could be
sponsored, and submitted for debate, REQUIRING FULL FUNDING of the Udall
LAW. I did not say "Udall Act" or "Udall Bill." I said Udall LAW.
I INSISTED that the Udall LAW's wording--which was available at the PAN
Forum in June, calls for ten research centers to be funded, calls for
scientists to be trained, and calls for public education.
I distinguished between the "Parkinson's research" the NIH CLAIMS is
already being spent--and the research that is the Udall law's intent.
The $45 million figure that PAN talks about is not actually COORDINATED
research on Parkinson's. Rather, it is research on many different areas
of brain chemistry and cells, and on other diseases. It is not all under
a single Parkinson's umbrella.
That $45 million that might help to understand Parkinson's, but, many
of the included grants, make NO mention of Parkinson's, SPECIFICALLY.
I'm sorry, but I disagree with PAN. I think the $45 million ought NOT
to be counted by us. It's like counting nectarines when you really want
to count up your peaches. Calling a nectarine a peach does not make it a
peach!!
I persuaded all three aides to listen when I mentioned that there are
more people in the United States with Parkinson's than with AIDS! If
AIDS gets $2400 million/year, then we deserve AT LEAST, as a FLOOR, as a
START, as a crumb of the cake, ALL 100 million dollars the Udall law
calls for. Anything less, is, to me, UNACCEPTABLE.
I also called Paul Smedberg of the APDA at 1-800-684-2732--he said he
will send a letter to Maine's Congressman Baldacci, asking Baldacci to
submit an AMENDMENT specifically intended to provide the $100 million we
deserve. I figure we have nothing to lose!
I've reached the point of refusing to be told to wait. That is a
HUGE mistake.
Ivan S.
-=^^^^^^WARM GREETINGS FROM^^^^^^^^^^=-
Ivan Suzman 48/11 [log in to unmask]
Portland, Maine land of lighthouses 67 deg. F
***********************************************************
On Sun, 12 Jul 1998 18:41:12 -0400 Bruce Anderson
<[log in to unmask]> writes:
> I started this string with a simple premise. The discussion which
>resulted went way beyond that, which I think is great because I for
>one
>learned quite a bit. (SNIP)
