Ivan and list friends
As my condition deteriorates I feel much the same as Ivan
TIME is passing----
HOW can we make ourselves visible!!
Anne Rutherford Newfoundland=20

On Fri, 26 Jun 1998, Ivan M Suzman wrote:

> Dear Paul Smedberg,
>=20
> I want to thank you publicly for something you've done-even if it makes
> me frightened.
>=20
> 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.
>=20
>   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.
>=20
>  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.
>=20
> 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??
>=20
> 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.
>=20
> 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.
>=20
> 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.
>=20
> Ivan Suzman 48/12
> Portland
>=20
> ^^^^^^WARM GREETINGS  FROM^^^^^^^^^^
> Ivan Suzman      48/11                 [log in to unmask]
> Portland, Maine   land of lighthouses     61    deg. F rainy
> ***********************************************************
>=20
> 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=92s 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=92s and Alzheimer=
=92s
> >and
> >various psychiatric syndromes".  Again, while the words may seem
> >encouraging
> >this does not mean Parkinson=92s 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=92s 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=92s 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 =96 "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 =96 fully fund the
> >Udall
> >Act.
> >
> >We have to stay focused =96 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=92s
> >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]
> >
>=20