What is the status of multiple system atrophy as a part of parkinsons?  I
applaud your efforts.  What can I do?
 
On Mon, 28 Feb 1994, Alan Bonander wrote:
 
> Following are the remarks of Joan Samuelson on the steps of the Senate
> building today.  This was referenced in the PRESS RELEASE.
>
> REMARKS OF JOAN I. SAMUELSON DIRECETOR, PARKINSON ACTION NETWORK RE: MEDICAL
> RESEARCH TRUST FUND
> FEBRUARY 28, 1994
> " I appear before you today to speak for Americans who, like me, live with a
> ticking clock. Many of you here today live with one, too. Like me, you know
> that, if medical research is prevented from dellivering breakthrough cures to
> us, your hopes for happy, productive lives will vanish -- perhaps very soon.
> In my case, having been affected with Parkinson's disease for seven years,
> every minute of every day is affected by my illness. When I wake up each day
> I think, how will I do today? If I have events requiring me to walk more than
> a half block, will I be able to make it? Will my hands shake so much that I
> have periods when I cannot write, or hold a phone?
> And I am one of the lucky ones. Unlike many people I know, some afflicted no
> more years than I, I am still able to feed myself. I still can work wee
> enough to hold down a job, so I am not yet on disability, on SSI, on welfare.
> But I also know that without a breakthrouh in treatment, the cell
> deterioation of Parkinson's will continue. Without that breakthrough, my
> future is to join those who are prisoners of their bodies, unable to move,
> unable to speak.
> The most heartbreaking part of this story is that this is unnecessary
> suffering. Scientists talk of miraculous breakthroughs that are just beyond
> arm's reach, using tissue transplants, neural growth factor, genetic
> engineering. They go so far as to promise me that, if the research can be
> funded, they can deliver a breakthrough in time to save me. But they also say
> the research is barely inching forward, because they have no money. To me,
> that is a death sentence.
> We have been in this situation before. Four years ago, medical science told
> us of incredible promise from tissue transplantation, but the Bush
> Administration was adhering to a ban on federal support. We gathered
> together, sick Americans, scientists and our loved ones, and worked to change
> that policy.
> People in high places told us we would never win, but we did -- with
> overwhelming Congressional support and the act of President Clinton two days
> after his inaugration. It would not have happened had our community of sick,
> suffering Americans not said, "This is not acceptable. This must change."
> But, as Senators Harkin an Hatfield know as well, permitting research to
> proceed is not enough: there must be money to fund it. In the case of tissue
> transplation, despite enormous breakthrough potential, a huge backlog of
> research sits with only tiny support available, because there simply is not
> enough research money to go around.
> We have a great opportunity now to change this, because of the giant
> spotlight on health care. I ASK TO TO JOIN ME IN SAVING OUR LIVES BY TURNING
> THE SPOTLIGHT ON THE NEED TO FINANCE MEDICAL RESEARCH. The health care plans
> on the table, including the President's plan, do no more tha maintain our
> bodies as we deteriorate and die. WE MUST SAY NO. We must insist that the
> true health care address the need to end this deterioation,stop this
> suffering, with treatment breakthroughs and cures.
> We must tell them to listen to the scientists, who will tell of the medical
> wonders they can perform. And tell them to listen to the economists, who
> point out the fiscal idiocy of withholding research funding while paying
> billions in care for those who could be cured.
> But the fetal tissue campaign taught us a critical lesson: to get the
> attention of the American people, they must hear from us know how those
> dreams and numbers translate into human lives. If we speak up, the American
> people--the Congrss, and the Administration--will care, because they are us.
> Every one of the has a spouse with cancer, or a parent with Alzheimer's, or a
> neighbor with Parkinson's, or a ticking clock of their own, inches away from
> a diagnosis of diabetes or a stroke. We must show them, and our elected
> representatives, that our lives hinge on this decision: millions of us could
> be cured or saved from unnecessary years of pain, crippling, imprisonment in
> our homes or nursing facillities, or early death.
> Talk to reporters, and talk show hosts, and people at the supermarket, and
> your elected representatives. Tell them you don't want a health care reform
> system that will pay billions for our deterioation and dying, but won't pay
> to cure us. Tell them the Harkin-Hatfield plan is the only health reform
> vechile that tackles this problem.
> And most important, tell them we have to act now. I can't wait. Millions of
> Americans can't either. Join me. Let's get busy and get this done."
>
> Regards,
> Alan Bonander ([log in to unmask])