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])