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Thank you Jackie G. I am very touched by the message that Michael J Fox gave to the hearing. You have made it possible for me and many others to read at first hand a message so important to us all, God Bless You and thank you again. Bern. http://members.teleweb.at/bernard.shaw/poetry.html [log in to unmask] If your face wants to smile,Let it, If it doesn't make it. -----Ursprüngliche Nachricht----- Von: Jackie G. <[log in to unmask]> An: <[log in to unmask]> Gesendet: Monday, October 04, 1999 3:36 PM Betreff: A copy of M. J. Fox's Testimony Testimony Before the Senate Subcommittee on Labor, Health and Human Services, and Education Committe on Appropriations September 28, 1999 Testimony for Michael J. Fox Mr. Chairman, Senator Harkin, and members of the Subcommittee - thank you for inviting me to testify today about the need for a greater federal investment in Parkinson's research. I would like to thank you, in particular, for your tremendous leadership in the fight to double funding for the National Institutes of Health. Some, or perhaps most of you are familiar with me from 20 years of work in film and television. What I wish to speak to you about today has little or nothing to do with celebrity - save for this brief reference. When I first spoke publicly about my 8 years of experience as a person with Parkinson's, many were surprised, in part because of my age (although 30% of all Parkinson's patients are under 50, and 20% are under 40, and that number is growing). I had hidden my symptoms and struggles very well, through increasing amounts of medication, through surgery, and by employing the hundreds of little tricks and techniques a person with Parkinson's learns to mask his or her condition for as long as possible. While the changes in my life were profound and progressive, I kept them to myself for a number of reasons: fear, denial for sure, but I also felt that it was important for me to just quietly "soldier on." When I did share my story, the response was overwhelming, humbling, and deeply inspiring. I heard from thousands of Americans affected by Parkinson's, writing and calling to offer encouragement and to tell me of their experience. They spoke of pain, frustration, fear and hope. Always hope. What I understood very clearly is that the time for quietly "soldiering on" is through. The war against Parkinson's is a winnable war, and I am resolved to play a role in that victory. What celebrity has given me is the opportunity to raise the visibility of Parkinson's disease and focus more attention on the desperate need for more research dollars. While I am able, for the time being, to continue to do what I love best, others are not so fortunate. There are doctors, teachers, policemen, nurses and parents who are no longer able to work, to provide for their families, and live out their dreams. The one million Americans living with Parkinson's want to beat this disease. So do the millions more Americans who have family members suffering from Parkinson's. But it won't happen until Congress adequately funds Parkinson's research. For many people with Parkinson's, managing their disease is a full-time job. It is a constant balancing act. Too little medicine causes tremors and stiffness. Too much medicine produces uncontrollable movement and slurring. And far too often, Parkinson's patients wait and wait for the medicines to "kick-in." New investigational therapies have helped some people like me control my symptoms, but in the end, we all face the same reality: the medicines stop working. For people living with Parkinson's, the status quo isn't good enough. As I began to understand what research might promise for the future, I became hopeful I would not face the terrible suffering so many with Parkinson's endure. But I was shocked and frustrated to learn that the amount of funding for Parkinson's research is so meager. Compared with the amount of federal funding going to other diseases, research funding for Parkinson's lags far behind. In a country with a $15 billion investment in medical research we can and we must do better. At present, Parkinson's is inadequately funded, no matter how one cares to spin it. Meager funding means a continued lack of effective treatments, slow progress in understanding the cause of the disease, and little chance that a cure will come in time. I applaud the steps we are taking to fulfill the promise of the Udall Parkinson's Research Act, but we must be clear - we aren't there yet. If, however, an adequate investment is made, there is much to be hopeful for. We have a tremendous opportunity to close the gap for Parkinson's. We are learning more and more about this disease. The scientific community believes that with a significant investment in Parkinson's research, new discoveries and improved treatments strategies are close-at-hand. Many have called Parkinson's the most curable neurological disorder and the one expected to produce a breakthrough first. Scientists tell me that a cure is possible, some say even by the end of the next decade - if the research dollars match the research opportunity. Mr. Chairman, you and the members of the Subcommittee have done so much to increase the investment in medical research in this country. I thank you for your vision. Most people don't know just how important this research is until they or someone in their family faces a serious illness. I know I didn't. The Parkinson's community strongly supports your efforts to double medical research funding. At the same time, I implore you to do more for people with Parkinson's. Take up Parkinson's as if your life depended on it. Increase funding for Parkinson's research by $75 million over current levels for the coming fiscal year. Make this a down payment for a fully funded Parkinson's research agenda that will make Parkinson's nothing more than a footnote in medical textbooks. I would like to close on a personal note. Today you will hear from, or have already heard from, more than a few experts, in the fields of science, book-keeping and other areas. I am an expert in only one - what it is like to be a young man, husband, and father with Parkinson's disease. With the help of daily medication and selective exertion, I can still perform my job, in my case in a very public arena. I can still help out with the daily tasks and rituals involved in home life. But I don't kid myself . . . that will change. Physical and mental exhaustion will become more and more of a factor, as will increased rigidity, tremor and dyskinesia. I can expect in my 40s to face challenges most wouldn't expect until their 70s or 80s - if ever. But with your help, if we all do everything we can to eradicate this disease, in my 50s I'll be dancing at my children's weddings. And mine will be just one of millions of happy stories. Thank you again for your time and attention.