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Thread: What do you have to lose?

  1. #91
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by Wise Young
    I am sorry, I was editing my response when you posted. In my opinion, the road to the cure is simple and straightforward. We need to NIH to spend more on spinal cord injury research and to fund clinical trials. The Christopher and Dana Reeve Paralysis Act is a good start. Without trials in the United States, we will forever be hearing about rats and mice walking. That is not so difficult for people to understand. If we can get a billion dollars for clinical trials, that would be great. If we can get $100 million, let's take it and get the trials going. In the meantime, NIH needs to continue funding the research so that new and better therapies are available. This is a very clear plan. Why can't the community get behind this?

    Wise.
    The specifics are poorly understood and ineffectively communicated. Who gets the money? How will it be spent? What cures can be expected to result? When will they be available? I am not implying that these answers haven't been offered, just that they may not be presented in a way that captures attention and inspires activism. Additionally, there is no consensus on the way to proceed and little attempt to build such a consensus. Look at the comments regarding U2FP by Chris Chappell in the off topic thread associated to this thread. Truth be told, the fragmentation of effort is what dissuaded me from investing the time and money required to attend the rally. I am not one who will align with this or that faction in this struggle. I decided to focus my attention on lobbying my members of congress as an individual.

    The truthful reality may be that applicable treatments can not be promised at this time. But understand that for people struggling to maintain hope, the promise of clinical trial networks that may one day advance promising theories into usable treatments is not that motivating. Maybe it should be, but for many, it is not.
    Last edited by Foolish Old; 06-08-2007 at 09:56 AM.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  2. #92
    Quote Originally Posted by Foolish Old
    The specifics are poorly understood and ineffectively communicated. Who gets the money? How will it be spent? What cures can be expected to result? When will they be available? I am not implying that these answers haven't been offered, just that they may not be presented in a way that captures attention and inspires activism. Additionally, there is no consensus on the way to proceed and little attempt to build such a consensus. Look at the comments regarding U2FP by Chris Chappell in the off topic thread associated to this thread. Truth be told, the fragmentation of effort is what dissuaded me from investing the time and money required to attend the rally. I am not one who will align with this or that faction in this struggle. I decided to focus my attention on lobbying my members of congress as an individual.

    The truthful reality may be that applicable treatments can not be promised at this time. But understand that for people struggling to maintain hope, the promise of clinical trial networks that may one day advance promising theories into usable treatments is not that motivating. Maybe it should be, but for many, it is not.
    This is pretty much how I feel also...

  3. #93
    Quote Originally Posted by Foolish Old
    The specifics are poorly understood and ineffectively communicated. Who gets the money? How will it be spent? What cures can be expected to result? When will they be available? I am not implying that these answers haven't been offered, just that they may not be presented in a way that captures attention and inspires activism. Additionally, there is no consensus on the way to proceed and little attempt to build such a consensus. Look at the comments regarding U2FP by Chris Chappell in the off topic thread associated to this thread. Truth be told, the fragmentation of effort is what dissuaded me from investing the time and money required to attend the rally. I am not one who will align with this or that faction in this struggle. I decided to focus my attention on lobbying my members of congress as an individual.

    The truthful reality may be that applicable treatments can not be promised at this time. But understand that for people struggling to maintain hope, the promise of clinical trial networks that may one day advance promising theories into usable treatments is not that motivating. Maybe it should be, but for many, it is not.
    It is sad that people cannot work together. This is not a new problem nor one that is restricted to people with spinal cord injury. If the community does not learn to work together, to submerge their egos, and stop battering each other, there will be little progress. What I want to point out is that many other communities, including AIDS, MS, MD, ALS, Cancer, Heart, Lung, JD (juvenile diabetes) have overcome these problems.

    It may be *your* "truthful reality" that applicable treatments cannot be promised at this time. It is not mine. Are you sure that the fragmentation of effort is what put you off on going to Washington? If you truly believed that the clinical trial network is key, you would not allow that to put you off. My question is what do you believe in, if not in the need for clinical trials to assess treatments rigorously and well?

    Wise.
    Last edited by Wise Young; 06-10-2007 at 10:17 AM.

  4. #94

    What specific actions should we take?

    "If we can get a billion dollars for clinical trials, that would be great. If we can get $100 million, let's take it and get the trials going. In the meantime, NIH needs to continue funding the research so that new and better therapies are available. This is a very clear plan. Why can't the community get behind this?"

    Dr. Young,

    Would you list specific steps that SCI patients like me can take to make this plan happen? Like I want to donate to your China SCI platform but don't even know how?

    Thanks.

    -Dennis

  5. #95
    Quote Originally Posted by Dennis888
    "If we can get a billion dollars for clinical trials, that would be great. If we can get $100 million, let's take it and get the trials going. In the meantime, NIH needs to continue funding the research so that new and better therapies are available. This is a very clear plan. Why can't the community get behind this?"

    Dr. Young,

    Would you list specific steps that SCI patients like me can take to make this plan happen? Like I want to donate to your China SCI platform but don't even know how?

    Thanks.

    -Dennis
    Dennis,

    I apologize for not providing the specific information about donating to ChinaSCINet. Aside from a link at the top of left hand corner of this website, I have been reluctant to do any fundraising on this web site. This is why you don't see any messages from me on this subject. However, the link will provide you with a way to donate to the Keck Center where we do have specific accounts solely for the purpose of supporting ChinaSCINet, stem cell research, or our Spinal Cord Injury Project. You can also call us at 732-445-2061 and ask for Dr. Patricia Morton who can help you.

    Now, regarding what specific steps can be taken concering legislation, I recommend three:
    1. Support the Christopher and Dana Reeve Paralysis Act. This bill is currently winding its way through the committee. There are many posts in the Legislative & Funding forum. Write and call to your Congressional representatives, plan to come to next year's rally (if you can). If this passes, this will set up a network of six paralysis centers that are dedicated to developing and testing therapies to reverse paralysis. It is not just about spinal cord injury but some of the funds will go to spinal cord injury clinical trials. Even after the legislation passes, quite a bit of work must be done to ensure that the funds are used properly by NIH.
    2. Support an increase of NIH funding. For five years, the Bush administration has flat-lined NIH funds, essentially taking a 3-4% cut every year. In addition, they have diverted billions of dollars from biomedical research to bioterrorism research. The consequence is that spinal cord injury research was cut by over 25% since 2001. Senators Harkin and Spector have been working very hard to increase NIH funding and it is important ot support that with letters and phone calls, and to ask your representatives to help.
    3. Support the Stem Cell Research Enhancement Act (SCREA). Congress has now passed the bill the second time and Bush has announced that he will veto it again. Please write to the White House and tell President Bush how unacceptable his veto is. Be polite but express your anger that he is playing politics with people's lives. His position has resulted in more killing and trashing of blastocysts without helping anybody. It has encouraged unmonitored and unregulated private use of embryos. It has not saved a single embryo.


    You live in the great State of California, which was the first state to rise in defiance of the Bush Administration's restriction of human embryonic stem cells. This year, California will spend more money on human stem cell research than the federal government will in the rest of the United States. Although Proposition 71 was held back by spurious lawsuits for 3 years, the California Supreme Court recently ruled that it is legal and the California Institute of Regenerative Medicine will go ahead and probably spend as much as $380 million this year on research grants to advance human embryonic spinal cord injury research.

    The state of New Jersey has passed legislation to fund $270 million of stem cell facilities in the state and is poised to pass legislation to fund another $500 million over 10 years for the research. The bill is now wending its way through the New Jersey legislature and hopefully will pass in the coming days. Other states are funding stem cell research, including Connecticut and Maryland. There are efforts underway in Missouri, New York, and Massachusetts to fund the research. I believe that some of these funds should be used for clinical trials of stem cell therapies in the United States and spinal cord injury should be one of the first priorities.

    These state funding does not reduce the need for NIH funding for human stem cell research or alleviate the need for strong lobbying at the federal level. A large majority of the states do not have any funding for stem cell research and many scientists are unable to work on human embryonic stem cells or get funding for such work. More important, the current federal rules are very wasteful, requiring laboratories to duplicate equipment and not allowing scientists to use any equipment previously purchased with NIH funds to do research on any embryonic stem cells other than the 22 cell lines approved by the NIH.

    Many states are funding spinal cord injury research. California has the Roman Reed Spinal Cord Injury Fund. New York, New Jersey, Kentucky, Florida, Indiana, and several other states have passed laws. A group by the name of Quest for Cure is lobbying state legislators to fund more spinal cord injury research. This has been a very successful effort. Over the past 10 years, Quest for Cure has probably raised about half a billion of state funding for spinal cord injury research and is responsible for saving the spinal cord injury field during the past 6 years of federal cuts.

    Finally, you should identify a laboratory whose research you like and donate to them. Or, you can donate to an organization such as the Christopher and Dana Reeve Foundation. There are many choices.

    Wise.

  6. #96
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by Wise Young
    It is sad that people cannot work together. This is not a new problem nor one that is restricted to people with spinal cord injury. If the community does not learn to work together, to submerge their egos, and stop battering each other, there will be little progress. What I want to point out is that many other communities, including AIDS, MS, MD, ALS, Cancer, Heart, Lung, JD (juvenile diabetes) have overcome these problems.

    It may be *your* "truthful reality" that applicable treatments cannot be promised at this time. It is not mine. Are you sure that the fragmentation of effort is what put you off on going to Washington? If you truly believed that the clinical trial network is key, you would not allow that to put you off. My question is what do you believe in, if not in the need for clinical trials to assess treatments rigorously and well?

    Wise.
    Dr Wise,

    I think I may not have been understood in my statement that applicable treatments cannot be truthfully offered at this time. Are you saying that you can promise specific procedures today with a date certain that we can access them? If not, we share the same reality. If so, what are they and what is that access date?

    As to what I believe in as the best path to a cure... Unfortunately, I do not believe in anything. But I do have great hope that there will be something that will improve the amount of motor and sensory function for people with paralysis. What that something will be, and how and when it will be produced, remains a mystery to me. I do believe it will take many forms, and will come from many sources.

    That is why I support everything and anything that could possibly produce positive results in improving a life with paralysis. I make the calls and write the letters in support of every relevant proposed law of which I am aware.

    If you will examine the words of your reply, I think that you will see more vinegar than honey in relation to encouraging me to advocate for the CDRPA. Have you found this approach effective in building consensus? Do you care?
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  7. #97
    Quote Originally Posted by Foolish Old
    Dr Wise,

    I think I may not have been understood in my statement that applicable treatments cannot be truthfully offered at this time. Are you saying that you can promise specific procedures today with a date certain that we can access them? If not, we share the same reality. If so, what are they and what is that access date?

    As to what I believe in as the best path to a cure... Unfortunately, I do not believe in anything. But I do have great hope that there will be something that will improve the amount of motor and sensory function for people with paralysis. What that something will be, and how and when it will be produced, remains a mystery to me. I do believe it will take many forms, and will come from many sources.

    That is why I support everything and anything that could possibly produce positive results in improving a life with paralysis. I make the calls and write the letters in support of every relevant proposed law of which I am aware.

    If you will examine the words of your reply, I think that you will see more vinegar than honey in relation to encouraging me to advocate for the CDRPA. Have you found this approach effective in building consensus? Do you care?
    Perhaps we are arguing semantics here. If you are making that point that there are no proven therapies that restore function for spinal cord injury, I agree with you. That is why we need the clinical trials. However, I had gotten the distinct impression that you (and you say others as well) don't believe in clinical trials or even increasing spinal cord injury funding by NIH. If I misunderstood, please forgive me. You asked for a plan. I told you the plan, expressing frustration why people are not supporting that plan. If my words seem a bit vinegarish to you, it is because honey has not worked.

    Wise.

  8. #98
    Senior Member Kratos's Avatar
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    i only know that whitout any trials there is no cure for nothin' go trials go!

  9. #99
    Senior Member Zeus's Avatar
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    Quote Originally Posted by RehabRhino
    I'm not saying normal SCI people should give up awareness raising while we wait for George Clooney to do his spine in properly next time, I'm just pointing out the reality of human nature
    Rehab,

    You made me chuckle with this.

    Sadly, human nature is what it is. Many people felt they 'knew' Christopher Reeve before his SCI. Princess Diana is probably the most extreme example of people en masse feeling they 'knew' a celebrity.

    It's morbid to think about - certainly selfish in the extreme - but I can't think of many things raising the profile of SCI research more than Clooney joining our ranks.

    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  10. #100
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by Wise Young
    Perhaps we are arguing semantics here. If you are making that point that there are no proven therapies that restore function for spinal cord injury, I agree with you. That is why we need the clinical trials. However, I had gotten the distinct impression that you (and you say others as well) don't believe in clinical trials or even increasing spinal cord injury funding by NIH. If I misunderstood, please forgive me. You asked for a plan. I told you the plan, expressing frustration why people are not supporting that plan. If my words seem a bit vinegarish to you, it is because honey has not worked.

    Wise.
    Doctor Young,

    I agree that language seems to be the chief cause of any perceived disagreement we have regarding cure.

    No, I don't BELIEVE that clinical trials will produce a cure. Nor do I BELIEVE that increased NIH funding will get us walking. But I sure as hell HOPE that both will produce such benefit to people with paralysis. That is why I strongly support and advocate for both of these things. If you have interpreted anything else from what I have written, I don't understand why. If you still doubt my support, I suggest you re-read my posts.

    Regarding the failure of honey to produce unity...maybe you need a different flavor. Vinegar sure as hell ain't going to work. I don't believe I ever said that I don't support clinical trials, nor do I believe that I said that others hold this view. I did say that there is much evidence that a growing number of paralysed people are impatient with the pace of paralysis cure research. A search of CCC archives will find many posts offering the opinion that researchers are content to do endless academic studies with no urgency to produce real cures. There may be a kernel of truth in that opinion, but, to my mind, it is unfair to claim that this attitude is prevalent in the field.

    The point I am trying to make is that it easier to garnish enthusiasm for human clinical trials than for trial infrastructure. Concepts such as "networks" and "centers" do not hold the rallying power inherent in a pronouncement that a specific treatment will be tried on real humans at a time certain. I am also saying, that to my knowledge, no such specific pronouncement has been issued. I wrote that it may not be possible to do so at this time.

    To me, this is like expecting that building a race track will generate as much enthusiasm as an actual race. I understand that one must proceed the other, but that doesn't stop the organizers from heralding specific cars and drivers that will compete after the track is built.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

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