Dear Paul Smedberg,

I want to thank you publicly for something you've done-even if it makes
me frightened.

Thank you for your clear explanation (reposted below) about the House
Appropriations Committee's NIH funding proposal, and how this is entirely
different from funding the Udall Act.  As I sit and absorb what you have
posted about the NIH appropriations proposal in the House sub-committee,
I feel  VERY scared.

  If you are young,and your body is deteriorating from PD,  maybe you
could understand how I feel, after 12 years of increasing difficulties
just surviving from one hour to the next.. I still feel that we who see
suicide, depression, exhaustion and isolation among us have got to PUSH
for a National Day of Udall Visibility.  I still think it should be
Friday July 3. I still adhere to the idea that we distribute a leaflet or
flyer, and get more signatures from people who support the Udall Act's
full, unconditional funding.

 I wish that Joan Samuelson of the PAN, Robin Elliot of the PDF, Larry
Hoffheimer of the NPF and Paul Smedberg of the APDA would come out with a
flyer that PWP's could distribute nationwide, either at Post Offices or
at supermarkets. It's time that the information we PWP's get is
consistent and UNIFIED. It could happen if we PWP's held back some of our
financial support until they COLLABORATE.

Or maybe, through the List, someone could post a first-draft, and it
could be edited and touched-up on our screens until we Listmembers had a
flyer suitable for distribution.  Anyone want to go ahead and try?  The
point is, HOW LONG DO WE HAVE TO WAIT FOR THE UDALL ACT TO BE FUNDED??

I know this sounds uncharitable, but you have to understand what's
happening to ME.  I am getting sicker. I am not really feeling at all
well, and it would be untruthful if I were to say that lobbying to accept
a 9.2% increase in NIH funds that do NOT contain Parkinson's-earmarked
Udall funding is acceptable strategy.  It is NOT.

And by the way, I am one of those poorer people whose Fuel Assistance
would be WIPED OUT by this NIH-appropriations proposal.  SO, I oppose the
damn thing-it reeks of politics--and the Udall Act isn't guaranteed at
all by this approach.

Paul Smedberg has done us all a service by telling us the harsh reality
we are up against.  It is not pretty.  And the FOCUS should be on the
Udall ACT, and NOT on the NIH appropriations "mark-ups" that might really
mean a total loss of Udall funding.

Ivan Suzman 48/12
Portland

^^^^^^WARM GREETINGS  FROM^^^^^^^^^^
Ivan Suzman      48/11                 [log in to unmask]
Portland, Maine   land of lighthouses     61    deg. F rainy
***********************************************************

On Thu, 25 Jun 1998 15:11:27 -0400 "The American Parkinson Disease
Association, Inc." <[log in to unmask]> writes:
>25 June 1998
>
>American Parkinson Disease Association
>Washington, D.C. Office
>800-684-2732
>
>We have received several calls regarding the June 23, 1998, mark-up of
>the
>Labor, HHS & Education Appropriations Bill by the House Appropriations
>Sub-Committee on Labor, HHS & Education.  Congressman John Porter
>(R-IL)
>chairs the sub-committee.
>
>Specifically, the questions focused on the sub-committee
>recommendation to
>increase the National Institutes of Health (NIH) budget by 9 percent
>or
>approximately $1.2 billion and what this means for the Udall Act.
>While the
>recommendation for a 9 percent increase in medical research at the NIH
>is
>significant that does not mean Parkinson’s research received any
>specific
>(or designated) increase despite the passage of the Udall Bill.  Dr.
>Varmus,
>in an analysis report, did state however that much of the increase
>would
>likely go into two especially fast-moving areas: "genetic medicine and
>neuroscience, which promises insights into Parkinson’s and Alzheimer’s
>and
>various psychiatric syndromes".  Again, while the words may seem
>encouraging
>this does not mean Parkinson’s research will receive a specific
>increase in
>research funding.
>
>I talked to sub-committee staff members yesterday and they confirmed
>that
>the "significant language" of the bill did not specifically mention
>Parkinson’s research.  There is, of course, a possibility that once
>the
>detailed bill is made public we may find some reference to the need
>for
>increased attention on Parkinson’s research at the NIH.
>
>The House Labor, HHS & Education Appropriations Bill is now sent to
>the full
>Appropriations Committee for consideration where further chances will
>likely
>be made.  The House is currently scheduled to bring debate on the bill
>after
>the July 4th recess.
>
>Several people have also asked – "What about the Senate?"  The Senate
>Appropriations Sub-Committee on Labor, HHS & Education will mark-up
>their
>version of the bill on (or around) July 7, 1998.  Many of our
>congressional
>supporters believe that the Senate is more likely to take action on
>the
>Udall Act.  This basically leaves us one week to influence the Senate
>Appropriations Sub-Committee on Labor, HHS & Education chaired by
>Senator
>Arlen Specter (R-PA).  The message is still the same – fully fund the
>Udall
>Act.
>
>We have to stay focused – we did it last year we can do it again.
>There is
>a lot of support for the Udall Act because you have made your voice
>heard.
>Congressional support for the Udall Act is also strengthened by the
>scientific potential for significant advancements in Parkinson’s
>research
>and effective treatments.
>
>Should you have any questions, need assistance with your advocacy
>efforts,
>want to confirm facts or need help with follow-up with a congressional
>office please call Paul Smedberg, APDA Washington, D.C. Office at
>800-684-2732 or via e-mail at [log in to unmask]
>