Testimony of Michael J. Fox We turn now to our second panel: Mr. Michael J.
Fox, Mr. James Cordy, Dr. J.
William Langston and Ms. Joan Samuelson. If you welcome you all here.
Ms. Samuelson is President of the Parkinson's Action Network, and very active in promoting funding, and Dr. Langston is the President of the Parkinson's Institute, and a renowned expert in the field, Mr.
James Cordy (where's your hourglass, Jim?) has been an extraordinarily effective advocate in the field, and as I noted earlier we have with us today Mr. Michael J.
Fox, a successful actor for many years, first as Alex P. Keaton on the television series Family Ties --you always work with a middle initial, don't you Mr. Fox?
--later in many movies, including Back to the Future, and City. Michael was diagnosed with Parkinson's in 1991 at the age of 30, and has become very, very active in Parkinson's advocacy. And one of the facts of life is that when someone like Michael J.
Fox steps forward, it very heavily personalizes the problem, focuses a lot of public attention on it, and has as a country to conquer this disease and many, many others. So we thank you for being here Michael J. Fox, and look forward to your testimony.
Again we'll put the lights on at five minutes Fox, we're going to start with you. Mr. Chairman, members of the Subcommittee--excuse me, 'pull the mike down'--the story of my life!
The mike is always too high--Mr. Chairman, members of the Subcommittee, thank you for investment in Parkinson's research. Some, or perhaps all of you, most of you, are familiar with me from my 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 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, 20% are under 40, and that number is growing.
had hidden my symptoms and struggles very well, through increasing amounts of medication, through surgery and by employing the 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, of their experience. They spoke of pain, frustration, fear and hope.
Always hope.
soldiering on is through. The war against Parkinson's victory.
What celebrity has given me is the opportunity to raise the desperate need for more research dollars. While I am able for the time being to continue doing what I love best, others are not so fortunate. These are doctors, teachers, policemen, nurses, as you had indicated earlier, legislators, and parents and live out their dreams.
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 symptoms, but in the end we all face the same reality: the medicine stops working. For people living with Parkinson's the status quo is not good enough.
As I began to understand what research face the terrible suffering so many with Parkinson's endure. 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 must do better. 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 Parkinson's Research Act, but we must be clear we aren't there 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 treatment 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.
Chairman, you and the members of the Subcommittee have done this country.
I thank you for your vision. Most people don't in their family faces a serious illness. I know I didn't.
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 fiscal year. Make this a down payment for a fully funded Parkinson's a footnote in medical textbooks.
pages isn't always easy!
) 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, bookkeeping, 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.
still perform my job, in my case in a very public arena. I can home life, but I don't kid myself; that will change. and mental exhaustion will become more and more of a factor, as will increased rigidity, tremor and dyskinesia.
I can expect seventies or eighties, if ever. But with your help, if we all do everything we can to eradicate this disease, in my fifties I'll be dancing at my children's weddings. And mine will be one of millions of happy stories.
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