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Thread: Time is running out and Brownback/Landreau supporters appear to have the edge.

  1. #1

    Time is running out and Brownback/Landreau supporters appear to have the edge.

    From Bill Rainey

    http://www.standard.net


    Wise,
    As you know Orrin Hatch has been one of the few Republican supporters of stem cell research. He is under attack in his home state. I think it would be wise for members of the forum to contact his office and express their support. Time is running-out and the Brownback/Landreau supporters appear to have the edge.

    Bill

  2. #2
    It would be unfortunate if the Brownback bill were to pass. The passage of this bill not only will eliminate any possibility of private or commercial development of cloned stem cells but sets up the very undesirable precedent of the federal government criminalizing human nuclear transfer.

    In my opinion, the apathy of the disability community on this issue has already set back the scientific field for years. Let me list some of the clinical trials that we would be doing now if the disability community had spoken up alongside the scientists several years ago.

    • Doctors would now be transplanting human embyronic stem cells instead of porcine stem cells in the brain and spinal cord
    • Doctors would now be having fetal OEG cells available for transplantation.
    • Doctors would now be trying cloned stem cells for remyelination, diabetes, stroke, brain injury, and many other causes of disability.

    There are no guarantees that stem cell therapies will cure spinal cord injury but we will never know if they cannot be studied or used. At the very least, the community should be extracting from Congress and President Bush the promise to guarantee $1.5 billion per year for adult stem cell research if they succeed in banning embryonic stem cell research.

    It is frustrating when I hear people complain on these forums about scientists not taking a chance, of not wanting to try therapies on people, of holding back ... when most members of the community are sitting back on an issue as important as this one.

    If the Brownback bill passed, the message from Congress is very clear: they consider the lives of blastocysts to be more important than the lives of millions of disabled people.

  3. #3

    What more can we do?

    Dr. Young,

    I've called and written/faxed everyone I can think of. I have also sent the letters to my family and friends so they could also send it in. What else can we do?

    Debbie

  4. #4
    Senior Member
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    You can fill out your comments on their web site. Mine is there

    http://www.standard.net/standard/new...1.html+subcat=

    If the first link no longer works, just go to

    http://www.standard.net
    and look for "ads opposing cloning aimed at hatch"

    After I read the article there is an area to voice your opinion to cast down this vile bill.

    "Subject: Re: Ads opposing cloning aimed at Hatch

    Post Comments

    Read Comments

    . Hopefully mine is still there under Znop. but here's what I had to say:


    "Subject: Re: Ads opposing cloning aimed at Hatch
    Date: 02/26/2002 14:32
    Author: znop@yahoo.com
    Post Reply

    As a disabled person of 10 years, you are denying me the possibility of more independence and possible cure of spinal cord injury and many other diseases if you pass this bill.

    Why should I live the rest of my life in misery due to the outdated and ignorant views of a lot of "right to life advocates.?? To me my life is more important than a possible incoming life.

    We need stem , embryonic, and adult cells to use for research to stop so much suffering and misery caused by many diseases that effects millions.

    Our suffering only benefits the nursing home industry and the pharmaceutical companies

    Don't pass this BILL!!!!!!!!!!!!!

    John/Chicago

    PS. please post your comments!!!!!!


    [This message was edited by The Human Cannonball on Feb 26, 2002 at 05:02 PM.]null

    [This message was edited by The Human Cannonball on Feb 26, 2002 at 05:07 PM.]

  5. #5
    John & Debbie,

    I like John's statement and your earlier postings. It has to state the reasons from your heart... As a scientist, I write carefully nuanced letters arguing the pros and cons. What is at stake here is the denial of potentially curative therapies to people.

    Please understand that I am not accusing members of our community of not speaking up. I am alarmed by the apathy of the general disability community. There are over 40 million families in the U.S. who are severely affected by disabilities.

    The foes of embryonic stem cell therapies are winning not only in Congress but around the world (in Australia, in the UN, in Taiwan, etc.) because they are willing to speak out louder and more vociferously than people in the disability comminity.

    Wise.

  6. #6

    Orrin Hatch Web Email

    Contact Senator Hatch and let him know we have a voice.

    http://www.senate.gov/~hatch/email_form.htm

  7. #7
    Senior Member X-racer...'s Avatar
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    This was my .02

    DO NOT SUPPORT THIS BILL. By passing this bill you are at the minimum adding years of suffering to millions of people living with spinal cord injuries, Parkinson's, Als, diabetes, Alzheimer's and many more injuries a diseases. The maximum you could be condeming people to a life time of suffering by being short sighted and eliminating a possibly fruitful avenue of research which could cure millions of people. The prudent and common sense thing to do would be to allow the research to continue until its proven effective or ineffective. Millions of people today deserve this chance not to mention the many more Millions of people who have yet to become ill or injured.

    Sincerely,
    Troy T. (Quadriplegic C6-C7)

  8. #8
    Senior Member kate's Avatar
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    a letter you can use

    What follows is the text of a letter I'm submitting today to my local papers in Seattle, plus the NY Times and Newsweek's MY TURN column. I'm posting it here with my permission to edit any way you like, sign your name and send to your own local papers, with an invitation for everyone who sees it to cut it out and send it to every last senator. This stupidity has to end!


    Horror. Is that the moment when you overhear one physician telling another, casually, that your husband will probably go home in two months a complete quadriplegic? "Two months?" "Quadriplegic?" Or maybe a day or two later, when the hospital financial officer, a kind-faced, well-dressed older woman, tells you calmly that your insurance is very good. Your expenses for surgery and intensive care and rehabilitation will only be about $150,000 more than is covered. And when you make a weak joke about having to sell your house, she replies, unblinking: "Oh, no. We let you keep your house. And one car." Is that horror, that instant of understanding that all the carefully saved college money, all the retirement money, everything extra, is gone?

    Or what about the moment your kids walk into the respiratory intensive care unit and avert their eyes from the sight of what their father has become? And after they leave, you see that one of them has written on the nurse's message board, in black letters: "I hate this. I need my dad."

    Is it horror when you realize that your house has to lose all its carpet and every last rug to make it easier for him to push his wheelchair? Or when the men come to build a wooden ramp in your garage where you used to park your car, back when you still had a life uninterrupted by catastrophe?

    Maybe the actual horror is the morning you watch him try desperately to put on his own pants, and it takes a full hour. Or the day the nurse teaches you how to change his indwelling catheter. Or the way your friends--your irreverent, ironic, wonderful friends--get teary and cautious at the sight of you, the way they look at you as if from a great distance.

    Nope. This, all of it and so much more, is trying and traumatic, and often frankly just boring, but the horror is elsewhere.

    Horror is knowing that every single year, just in the United States, all of this will happen about eleven thousand times. Eleven thousand more people will join the hundreds of thousands already injured. Most of them will be young men. Most of them will be unemployed now, forever. Most of those who aren't parents already will never have children. Horror is knowing that the ten billion dollars spent on direct and indirect costs of spinal cord injury is one hundred times the annual investment in research for a cure. One penny of research for every dollar spent in maintaining this grim status quo. That's horror.

    It's hearing the most knowledgeable neuroscientists in the world say that a cure is within reach, that science is no longer the obstacle. The obstacle, they say, is pessimism, that and the lack of clinical trials. Until recently, very few people believed that there would ever be a cure for spinal cord injury; now scientists know better. Regeneration of spinal nerve cells can be done. hat's horrifying is knowing that we aren't doing it. Horror is the helplessness of listening to endless debates about the morality of using stem cells from embryos already destined for destruction while your daughters struggle to swallow the news that they might never get a full hug from their father again. Never.

    What's inspiration, then? Is it inspiring when desperately injured people refuse to be ashamed of their diminished bodies? When they work and travel and fall in love? Sure. We cheer for them, resolute and strong in their wheelchairs. We watch the tearjerker movies and marvel at stories of extraordinary courage. But what if it were you in that chair, your thin legs hidden beneath a blanket, your kids getting a piggyback ride from some other dad? Which would you rather be, inspiring or well?

    Science is no longer the obstacle. Clinical trials are necessary. Embryonic stem cells offer one of the most promising lines of research. Those cells already exist, frozen and waiting only to be destroyed. Are these blastocysts really of more value to us all than the promise of so much suffering ended? No. Do not pass the Brownback-Landreau bill (S-1899) currently under consideration. We implore you. If your conscience really demands that you restrict this important line of inquiry, then you must appropriate funds to open others.

    Here's a challenge to all senators: Inspire us. Get to work and build some momentum for getting the cure done. You can do it. You're not paralyzed.

  9. #9

    My letter - Yes I know It's a little strong

    My letter to those involved. Feel free to edit and use.

    Please vote NO to the Brownback/Landreau bill.

    "ALL IN THE NAME OF RELIGION"

    As I ponder upon and grieve over the 5,000+ people who died in the WTC attack and the war in Afghanistan, I realize how angry I am with the religion of Islam. I listened and understood the people who said the attackers practiced a twisted version of Islam and not one sanctioned by the Arab people. But then several things occurred to me. What I am about to say is probably going to anger a lot of people, but I strongly feel the need to say it. By the way, I am typing all of this with two pencils attached to implements on my frozen hands. But more on that later. Since the beginning of recorded history, people have been slaughtering others in the name of God.

    Just to name a few:

    ï‚· Jesus Christ was nailed to a cross because he threatened Rome's Gods and therefore Rome's control of the people.

    ï‚· Christians were killed because they chose to follow Christ as opposed to be oppressed under Roman rule.

    ï‚· The Crusades: Five centuries of Holy War - Christians versus Muslims. This war to regain the Holy Land from the Muslims started in 1096 and ended in the late 13th century.

    ï‚· The Inquisitions (Roman and Spanish): In the middle ages the Catholic Church regarded any person who did not believe in the church doctrine to be heretics. Thousands upon thousands of people were killed in the name of God

    ï‚· European Witch-Hunts: From 1400 to 1800 thousands of people, mostly women were killed for practicing witchcraft. When in fact, their only guilt may have been having too many cats, having a jealous or vengeful neighbor, or having healthy kids that didn't catch the flu bug going around.

    ï‚· Israel against Palestine: Jews versus Muslims - Jehovah versus Allah.

    ï‚· England vs Ireland (Protestant versus Catholic)

    I was horrified at the actions on September 11, as was most of the world. I truly wish people would stop killing in the name of their God. My God would not want one person harmed in his name. I'm sure there are many of you reading this that think to yourself the good old USA doesn't kill in the name of God. YOU'RE DEAD WRONG.

    I died on October 19, 2000 and entered Hell. Good Christians, including the President, are keeping more than 350,000 spinal cord injured Americans in Hell. They keep us here in the name of God. I am alive inside a dead body. I'm not even going to mention the many thousands killed every year by ALS, Juvenile Diabetes, etc. In the name of God they're made to suffer first. In God's name you make it slow and agonizing. You aren't content in killing us outright. You take pleasure in watching 10% of us kill ourselves, while the remainder slowly die in misery and despair.

    In your opinion your God would prefer that you take embryos and throw them in the trash instead of using them as wonderful donors to cure thousands of people. In my opinion it is not God that is guiding your conscience but Satan. Heaven forbid even one of you high-morale people come down with one of the injuries or diseases that could be cured by stem cell research. I guarantee that the majority of you would change your mind instantaneously...that the suffering you decree as another's lot would suddenly not fit your comfort zone. Remember that inspired idea, "Do unto others as you would have them do unto you." Watch your children (as my mother watches me) as their muscles begin to atrophy. Watch your children (as other parents watch theirs) as they slowly die of juvenile diabetes. Is your God really that cold hearted or cruel, are you?

    If you truly believe in your convictions, then you and our President must enact laws right now that would make in-vitro fertilization a crime as it leaves left over embryos to be murdered. You must enact laws that no person can donate organs upon death because, after all, God might not like it. As a matter of fact, you should outlaw doctors and scientists to make sure you aren't going against God's will - I mean, God will surely cure you if He wants you cured.

    If you truly believe that those embryos are children, don't allow them to die in vain. Instead, let them to live in the souls and bodies of those who will cherish them every day of their lives. If you only knew how incredibly difficult it is to live without your body you would show some compassion. Try for one day to remain perfectly limp below the neck. Now remember, you can't move, drink, feed yourself, or take care of your bodily functions (ask a close friend to lend a helping hand by removing the first with their fingers and the second with a rubber tube). See how long you can make it or how quickly you lose your friends. Talk to God tonight and ask him what you should do. I'll tell you, since I won't make it another year in this wheelchair I'll ask Him if he was pleased with your decision.

    Debbie

  10. #10

    Wow Debbie that was great!!

    Very good. You got it head on. I wrote something also and sent it to the senators. Nothing compared with what you came up with, but at least tried. Here it goes:

    Forget about me and forget that I have been paralyzed for 11 years, since I was 17 years old. Imagine yourself paralyzed, or your daughter or son, imagine not being able to move your legs, go to the bathroom, use your hands, scratch an itch on your nose. Imagine being the outcast, the person that gets to watch the other people play baseball or anything else but not atually participate. Imagine not being able to button your own shirt, put on your own pants, or live any type of independent life. Come on, you can do it, its not that hard!! All you have to do is stop imagining and the bleak vision you had will disapear, wow, you are cured. Not a nice vision, not being able to do those things, is it? Well, it can happen to you, trust me! It happened to me and I was just like you.

    Any visions that you had when you were trying to imagine this are nothing compared to what reality has handed out to people with Spinal cord injury or many other neurological diseases/lesions.

    For one thing no one has any idea of what it is like to be in this situation until you are actually in it, besides that, you had the comfort of knowing that it was all in your head and when you decided it was over, it was actually over.

    Now, think about me, or anyone else with a SCI, with a higher injury than mine or a lower injury. Its not in our imagination, it is reality, we cannot choose to ignore it, it is part of us. We cannot leave it behind. We have no clue when it will end, or if it will ever end. We do know one thing though, it CAN END, there is a solution. Deciding to ban the cloning of embryos is prolonging our status, or sentencing us to a life of paralysis. Anyone paralyzed for 2 days without knowing if he/she would ever walk again would would agree. Please don't ban our will to walk again and to be independent.

    I may have a very onesided view of this situation, there are some ethical questions that are significant. There may be some mad scientists that will use this sort of knowledge in ways that are not appropriate, for this reason, cloning must be very highly regulated. Nevertheless, the technology is here, if anyone has the interest of using it for any wrong doing, they can and will not be dissuaded by a government ban.

    I believe this technology is inevitable, we may delay it, but sooner or later it will happen, the later, the worse for those of us that need it, the later more of us will need it and some of you, will be part of us. By that time, when you need it will it be available or are you willing to spend 10 years in a wheelchair, wondering what could have been. Trust me its no stroll in the park. Au contraire mon frere. Its virtually impossible for me to show you what I'm going through, but its not impossible for me to get out of this chair and walk again, but investigation in this area now is needed, and the sooner the better for all of us.

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