Hello Parkinson's Community and friends,
This evening, I called the Parkinson's Action Network's Michael Claeys,
to describe a letter I just received at home from Sara Holmbom, Staff
Aide to U.S. Senator Susan Collins. Many of our Listmembers know that
Michael has been a tireless campaigner and advocate for increasing the
Parkinson's-focused research budget at the National Institutes of Health
(NIH) to the $100,000,000.00 annual investment level called for in the
Morris K. Udall Parkinson's Research and Education Act, that achieved
passage in November, 1997, in Washington.
I told him of my great joy and honor, in having been asked to lead
this year's "Udalling" (coined, I believe, by Los Angeles's Mary Yost) by
our slowly emerging Parkinson's community in Maine. This volunteer work
has been richly rewarding at every point in my journey, and has sustained
me when I have nearly bottomed out with endless Parkinson's symptoms and
medical difficulties. This work, to which I owe an immeasurable "Thank
You" for the support and help provided selflessly by my principal
caregiver from December through June, Thaddeus (Jay) Forys, Jr., now of
East Rutherford, New Jersey, as well as to many, many others, has
resulted in BOTH of Maine's Senators, Susan Collins and Olympia Snowe,
signing onto a very significant October 5, 1998 letter.
The letter, signed by 9 other Senators (Cochran, Hollings, Bond,
Faircloth, Boxer, McConnell, Mack, Laing and Thurmond), asked Senator
Arlen Specter, Chairman of the Senate Appropriations Committee, to
provide his "strong support" for these 11 Senators' efforts to "direct"
the NIH to carry out the intent of the Udall Act.
It points out that the NIH has listed under "Parkinson's research"
many grants with "little or no relevance to Parkinson's disease." It
asserts that thus far, "only 35%" of the "$106,000,000.00" which the NIH
indicates it will allocate in the Fiscal Year 1999, which I believe just
began on October 1, 1998, are "truly Parkinson's focused," "with most
having little or no relevance to Parkinson's disease."
It adds that, of the NIH grants claimed to be part of the
Parkinson's totals, until now, "39% of the grants have no relevance,
indirect or otherwise, to finding a cause and cure for this disease."
Moreover, the letter tells us that the Senators "intend to work
closely with the NIH in the coming year to ensure that the Congressional
mandate is followed."
The Senators add that the Senate Committee "expects the NIH to use
this allocation for research focused on Parkinson's disease, i.e. where
the principal focus of the research is the cause, pathogenesis, and/or
potential therapies or treatments for Parkinson disease."
These are strong words from a group of very influential and
concerned Senators (11 plus Specter). As a Young Onset Parkinson's
sufferer in an increasingly adverse situation medically, I am thrilled
that not only do we now have this "Parkinson's group" of Senators, but
also, I am very grateful that my efforts locally have helped to
convince each of my Maine Senators to join in pressing for a cure to
Parkinson's Disease, at a much higher funding level than in the past.
The 11 signers of the October 5 letter, which almost feels to me
like a Senatorial mandate, is a great milestone for our world Parkinson's
Community, and reflects diligent and impassioned work at the grass-roots
level in many, many corners of the USA and beyond.
. I know that here in Maine, at every Greater Portland support group
meeting I go to, we set aside time to discuss the latest responses to our
innumerable petitions, letters, calls and visits to our entire
congressional delegation of Senators and Representatives. "Udalling" has
been a highlight of our entire agenda. Being involved has increased the
hopes, and diminished the detached and isolated feelings that we
Parkinson's sufferers have to endure when we feel depressed and
exhausted.
One of the unforeseen spin-offs for me is that I am increasingly
called on to appear on local TV (7 times already and more in the works),
and somehow have been dubbed as either the Maine "spokesperson" or
"congressional liaison."
A second post follows.
Ivan Suzman 48 / 12 yrs. of noticeable symptoms / 9.5 yrs since
diagnosis
Portland Maine
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