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hi all joan samuelson has been my hero since i first 'met' her if anyone can become 'hero-er', she has just done it, imho janet --------------------------------------------------------------- At 01:27 2001/05/18 -0700, mary yost the most wrote: >message from Laura Eckart, >Advocacy Associate, Parkinson's Action Network: TESTIMONY OF JOAN SAMUELSON, PRESIDENT, PARKINSON'S ACTION NETWORK BEFORE THE SENATE SUBCOMMITTEE ON SCIENCE, TECHNOLOGY AND SPACE COMMITTEE ON COMMERCE MAY 2, 2001 Mr. Chairman and members of the Subcommittee, thank you for this opportunity to testify about important issues that arise on the cutting edge of high-tech, life-saving biomedical research. As one of more than a million Americans who suffer from Parkinson's disease, this issue has deep personal significance. I appreciate the opportunity to submit my testimony for the record and am sorry I could not appear before you in person. The Parkinson's Action Network was created in 1991 to give voice to a community that has been largely invisible, and as a consequence has not received the federal research investment equal to its great potential. The Network's mission is to educate the country and its leaders about the need to speed research, deliver breakthroughs and cure this dreadful disease. Parkinson's is a devastating progressive neurological disorder that makes it difficult to walk, causes uncontrollable tremors, and in its final states robs individuals of the ability to speak or move. Parkinson's is caused by the degeneration of brain cells that produce dopamine, a neurochemical controlling motor function. There is great reason for hope, however. In the last several years, scientists have made tremendous progress in the search for a Parkinson's cure. One of the most promising lines of research involves using human embryonic stem cells -- the cells made available by leftover frozen embryos created by and for couples undergoing the scientific miracle of in vitro fertilization. Stem cells are the building blocks of the body, with the ability to divide indefinitely and differentiate into virtually any type of cell in the human body. Scientific experts testifying before Congress in December of 1998 named Parkinson's as the first disorder that they expected to benefit from stem cells, and predicted it could be done within a decade -- and as soon as five years -- if the funds needed to tackle this problem were available. Since embryonic stem cells were first isolated by scientists at the University of Wisconsin and Johns Hopkins University in 1998, their enormous potential to save the lives of untold millions of Americans has become increasingly evident. Their promise lies in their ability to become life-saving dopamine cells for Parkinson's patients, bone marrow cells to treat cancer, insulin producing islet cells for patients with juvenile diabetes, just to name a few possibilities. Therapeutic cloning, the subject of this hearing, could potentially speed this line of research by providing a new source of stem cells. However, before I go any further, I want to state clearly and concisely that the Parkinson's Action Network steadfastly opposes human reproductive cloning. We agree with the other witnesses testifying at this hearing, who we believe represent the overwhelming view of the scientific community, Members of Congress and other Americans that human reproductive cloning is dangerous and ethically questionable and should not be pursued. Having said that, the Parkinson's Action Network does support further research on therapeutic cloning of cells that could be used to replace damaged cells in patients with Parkinson's and many other diseases. Unlike reproductive cloning, therapeutic cell cloning will not lead to the creation of a human being. What it will do is provide another source of stem cells that could differentiate into dopamine producing cells, potentially producing a cure for Parkinson's disease. I am not a scientist, but I am someone who struggles through each day with a chronic illness. I speak for the larger Parkinson's community for whom time is not neutral. We need a medical rescue and we need it now. Scientists agree it is possible this decade. To shut down one avenue of medical research that could speed the pace of a cure would be unthinkable -- lives would be lost. With appropriate ethical safeguards, we must aggressively pursue all forms of stem cell research in order to realize its potential as soon as humanly possible. Opponents of stem cell research have tried to lump together human reproductive cloning and therapeutic cloning and mislead the public into thinking they are the same thing. There is virtually unanimous agreement that cloning a human being -- creating a duplicate person -- is not something that should be attempted. Cloning potentially life-saving cells -- each smaller than a pinprick -- is another story. Why shouldn't those of us suffering from deadly diseases be able to use one part of our bodies to cure another part? Therapeutic cloning could allow us to do just that by "growing" new cells that could replace those that are damaged or lost. Additionally, some argue that embryonic stem cell research is not necessary at all. They say "adult" stem cells may be just as effective and have seized recent press accounts describing research on fat and placental cells as potential sources of stem cells and used them to argue that embryonic stem cell research may no longer be necessary. This is simply untrue. The potential value of "adult" stem cells is much less certain and experts in this field of research agree that it will take years of further study to determine their therapeutic potential. As Doug Melton, Ph.D., Chairman of Harvard University's Department of Molecular and Cellular Biology, pointed out in an April 22 letter to the Washington Post, such claims are "extremely premature." He explained that "...fat cells have not yet been shown to be able to differentiate into cells of any kind. Nor has it been shown that the cells studied are truly stem cells..." As Congress begins to debate legislation that would regulate or ban human cloning, the Parkinson's Action Network urges you to ensure that such legislation does not impede cell research that could lead to cures for devastating diseases such as Parkinson's, Alzheimer's, cancer, diabetes and others. If Congress stands in the way of this research, millions of Americans will be forced to wait as the clock ticks, enduring unnecessary suffering and death. Again, I thank the Subcommittee for the opportunity to submit testimony for the record. Parkinson Action Network http://parkinsonsaction.org/ --------------------------------------------------------------------------- ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn