I can still play the clarinet, piano, and compose. This is study nr. 1 of "Three Studies on American Folksongs" If you play the Vaughn Williams "Four Studies", you'll see the hook...
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Sunday, June 6, 2010
Remarks, ALS Hope Foundation Concert, 6/5/10
I am very pleased to have the opportunity to speak to you again. Indeed, I have been blessed with the gift of time, and tonight, I would like to speak about the future. You may think that people living with ALS don't think about the future. In fact, we are sometimes told at the early stages of the disease "to live like there is no tomorrow." I vehemently disagree. If you live like there is no tomorrow, that means you are selfish and have no hope. ALS is a terrible disease with no cure. But the damage it causes to individuals, loved ones, care givers, and communities can be healed, and hope can be substituted for hopelessness. But it takes a unique organization like the ALS Hope Foundation to bring this light to people living with ALS, and it takes your support. We are infinitely grateful for your help.
So, what about the future?
When will we cure ALS? As a scientist, I can be sure the time will come sooner than any of us can imagine. Last year, I served on a scientific peer review panel for the department of defense ALS research program. We evaluated research proposals from some of the best research groups in the country, if not the world. Millions of dollars were going to be awarded to researchers based on our recommendations. I read every proposal. I was excited and amazed. They're finding out things about this disease that were not even imagined two years ago. We are on the right track. By the time your children get to be my age, and I am not that old, ALS will be history. The ALS hope foundation supports this type of research. It is happening just a few blocks away from here. Cooperation and collaboration is occurring between research groups right here in Philadelphia, again promoted by the efforts of the hope foundation and your support.
What about things that will affect the lives of people living with ALS right now? The hope foundation clinic is a pioneer in clinical research. The lives of people living with ALS are being extended and lives are being made more rich and meaningful with new technology that was just a dream ten years ago. The hope foundation brain computer interface research program has taught me how to spell my name using only my brain waves. What will come next? That will be determined by your support and the skill of the foundation researchers, which I assure you is world class.
But what does the future have to do with the music I composed for you tonight? The music is based on old traditional American folk songs. When a musician does anything with folk music, he is taking something from the past that he considers important and beautiful, and makes it his own, with the intention of preserving it for the future. Without the help of the hope foundation and your generous support, I would no longer be a musician, and my friends and I, who live with ALS, would have no reason to look to the future.
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