Before the Labor, Health and Human Services Subcommittee of the Senate Appropriations Committee
Testimony of Jerry Lewis - Biography
02/27/01
Jerry Lewis with Benjamin Cumbo at the Senate subcommittee hearing. |
Mr. Chairman, Senator Harkin and members of the subcommittee, I'm grateful for this opportunity to speak on behalf of the quarter million Americans affected by muscular dystrophy. A quarter million - that's a big number. So you can put a face on this problem and understand in human terms why we're all here, I've brought a short video for you to watch.
That cute little boy in the video is now the handsome young man sitting to my left. Benjamin Cumbo, now 13, was MDA's National Goodwill Ambassador in 1996. He's what this is all about.
For 50 years, I've been fighting an evil, insidious force that preys on people like my buddy Benjamin. I vowed all those years ago that I'd beat muscular dystrophy in my lifetime. I'll be 75 next month. Now, I'm a tough old bird, but don't you think that at this point I could use a little help?
Since 1950, the Muscular Dystrophy Association has been out there leading the charge against all nine forms of muscular dystrophy, not just Duchenne muscular dystrophy about which you've heard a great deal today. Virtually every major discovery in these diseases was funded by MDA. We've located the genetic defects for almost every form, we've tested countless drugs and compounds looking for the answers, we've developed techniques that are being used in the battles against scores of other diseases. We didn't ask the government for help because we could do it alone. We didn't need help.
My message to you today is this: Things change. Today, we need the help. MDA has laid all the groundwork. Now it's time to take what we've learned - this vast well of knowledge - and turn it into treatments and cures. We've worked so hard, received so much support from the American people, it would be a tragedy, a sin, for our march toward victory to be stalled now.
We're actually the victims of our own success. MDA has done such an outstanding job of providing vital services and directing revolutionary scientific research that everyone, including the government, thinks we can do it all. Well, I'm here to tell you, we can't. Not anymore. The clinical trials that we must conduct to test the things that we think could stop muscular dystrophy are incredibly expensive. Without government support, many trials will never happen and those that do will take much longer. This is unacceptable. I can't tell a quarter million Americans that they aren't a national priority. For years, government research in muscular dystrophy has been underfunded because everyone counted on MDA to carry the load. This has allowed a lot of money to go for research in other diseases. You've heard testimony about how diseases affecting far fewer people get much greater funding through the National Institutes of Health. It's time for the quarter million Americans that I have the honor to represent to get their fair share. They've waited long enough and they deserve it. That's why I'm asking for a $100 million annual increase in NIH funding for muscular dystrophy research.
Now, I know what you're thinking. This crazy comedian is asking for the world. No, I'm not. I'm only asking for the weapon that we need to win the war against muscular dystrophy. I don't believe anyone would think a quarter million Americans represent acceptable casualties. I don't think the loss of even one of 'my kids' is acceptable.
Other witnesses here today have given you all the facts and figures you need to justify another $100 million for muscular dystrophy research. When it comes to 'my kids,' I don't think in terms of facts or numbers, I think in terms of children, of mothers, of fathers, of brothers, of sisters. That's what this is all about and has been for 50 years. I carry in my heart the memory of every person with muscular dystrophy I've ever met. I hope you'll carry the image of Benjamin, both the little boy and the young man, in your hearts when you consider this request. If you do that, I know you'll do right by Benjamin and all 'my kids.'
Thank you and God bless you all.
Read more about the Senate Hearing.
Read the other testimonies, [Christopher Rosa, Ph.D.] [Dr. Leon Charash] |
