Page 9 of 21 FirstFirst 12345678910111213141516171819 ... LastLast
Results 81 to 90 of 210

Thread: What do you have to lose?

  1. #81
    Quote Originally Posted by cheesecake
    I disagree, each and every one of us needs to become the face of paralysis and SCI. Not a famous face.
    We need both. No offence but people take much more notice when an idol is struck down. It frightens them. Also their media exposure is obviously much greater.

  2. #82
    Quote Originally Posted by cheesecake
    I disagree, each and every one of us needs to become the face of paralysis and SCI. Not a famous face.
    You may think this but believe me it doesn't work. Collectively, human nature does not take notice of normality. We are an increasingly celebrity driven culture - SCI's profile was never higher than when Christopher Reeve was alive.......how many more people are aware of Parkinson's because of Michael J Fox?

    AIDS is often cited as a cause which successfully raised cash and awareness - because it killed celebs, the rich and famous raised cash by eating oysters at Elton John's and Princess Di cuddled victims. These are obviously not the ONLY reasons but they contributed massively.

    Virtually every successful charity has a celeb face at one time or another for a reason. Professional fundraisers/marketers know celebrity sells - rightly or wrongly.

    Loads of people run marathons in memory of family who died of cancer or other diseases - they all get their 15 minutes with local media but who gets the national airtime? The celebs doing the same thing.
    C5/6 incomplete

    "I assume you all have guns and crack....."

  3. #83
    Quote Originally Posted by RehabRhino
    Loads of people run marathons in memory of family who died of cancer or other diseases - they all get their 15 minutes with local media but who gets the national airtime? The celebs doing the same thing.
    Cancer kills far to many people for it to be ignored. Cancer is a reality to many people where SCI isn't. no one goes through life thinging "i may become paralysized"....

  4. #84
    Quote Originally Posted by Eric.S
    Cancer kills far to many people for it to be ignored. Cancer is a reality to many people where SCI isn't. no one goes through life thinging "i may become paralysized"....
    True, cancer may be the extreme example, which is why I also said 'and other diseases.'

    Re your other point, you are right - if they saw a picture of you or I in a wheelchair they think 'oh, a guy in a wheelchair, how sad,' but they didn't know you or I before, there is no shock of seeing what we have lost.

    People identified with Reeve the Hollywood hunk who became a quad. Because they 'knew' him before his accident, his disability becomes more shocking to their pysche. They identify more.

    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
    C5/6 incomplete

    "I assume you all have guns and crack....."

  5. #85
    Quote Originally Posted by Princess "Leia"
    I agree with you Cheesecake and have always felt this way. I recall during the first DC Rally it was a goal of mine to put a human face on people with SCI, ya know the regular guy sort of approach. I feel it does not require celebrity status, look at Jerry's kids or the Easter Seal kids.
    Jerry's kids are being assaulted now for being politically incorrect. Easter Seals was promoted by many recognizable faces because they cared and believed in what they were doing. BUT to see the kids NOW is considered spreading pity. Poster kids are in essence a pity play. The people that DO expose their disabilities don't do it for pity..they do it for MONEY. They do it to open up eyes and wallets so donations are given to help CURE them. BUT not everybody realizes that it seems. At least not now when there is so much promise that the money will actually cure some of the reasons they are poster kids..Jerry's kids..Easter seal kids.

    If the disabled is seen as functioning just fine..cause the AB populations really don't know what it takes to appear that way..then you become some inspirational story that the people love to read..but don't wish to donate anything. Why I dunno. Never could figure that out except in a way that is too painful to realize maybe.

    I watched the Queen being entertained after the white tie wingdig at the White House.
    It all was so as it is. Perlman of course entered the chamber walking on his crutches and then was faced with two fing steps that he had to navigate and of course took quite an effort then getting in place to play for the audience of cob-asses..that just watched it all and was so inspired yet..so uninspired.

    After the performance and it was a heartfelt one..Queenie and the rest of the non-mortals got up to leave. Perlman stayed seated. I imagine because he was so worn out he really didn't have the strength to stand up like all the rest of the people did..some older even. And Queenie didn't even look at him or nod or a damn thing. Neither did her husband. Bush did shake his hand. One time Bush looked human in my eyes.
    And the rest of the elegant attendees especially the Royalty looked transparent and weak and quite unattractive.

    So where is the median in this? How do you inspire understanding without giving up your dignity?
    Last edited by Lindox; 06-07-2007 at 04:19 PM.
    Life isn't about getting thru the storm but learning to dance in the rain.

  6. #86
    Foolish Old,

    It is very frustrating to me that you should ask this question. I have been posting about THE PLAN for nearly a decade. If you can't tell me what this plan is, I give up.

    Just in case you missed it, the plan has the following elements.
    • Many promising therapies have been reported to regenerate and remyelinate the spinal cord. These therapies need to be tested in rigorous clinical trials in people with chronic spinal cord injury.
    • Combination therapies will be required for the best results. These include therapies that can provide a cellular bridge across the injury site, a sustained source of growth factors, and blockade of growth inhibitors that prevent regeneration.
    • The only way to test therapies efficiently in people is to have clinical trial networks that can continually and efficiently test these therapies in large numbers of people. Such networks would also encourage industry investment into testing therapies.
    • In the meantime, there must be continued NIH and other funding to improve therapies and provide a pipeline of therapies of the clinical trials. The therapies that we have currently are not ideal and they can and should be continually improved. New therapies must be developed.


    I do not believe that embryonic stem cells are necessary or sufficient for the cure of spinal cord injury. On the other hand, I believe that study of embryonic stem cells will greatly accelerate development of cell sources that would be very important for spinal cord injury.

    Wise.



    Quote Originally Posted by Foolish Old
    Dr. Young,

    I don't know if you missed my question, or...???

    I will repeat it in the hope of an answer.

    Given that walking seems like the most achievable SCI recovery goal - Is it possible to articulate a specific plan that would get us there? Such a plan would detail the resources needed, identify those resources that currently exist and suggest how to create whatever is missing, project the dollar cost of such a commitment, and provide a date when walking could be restored to those meeting the criteria.

    I have seen many criticisms of the SCI community for not effectively organizing to advocate for cure. Could this be because cure research seems vaporous and academic - always in some unknown distant future and unspecific in what it will produce? Many paralysed people have lost faith in the ability and commitment of scientist to produce anything but rat cures. I know you have read here the negative view that several members have regarding the Miami Project.

    I do believe that a project with an articulated goal of specific usable treatments for real people would gain massive support. But it needs to have a budget and a date that could make it real.

    Or is this just impossible at this time?

  7. #87
    Senior Member Foolish Old's Avatar
    Join Date
    Jun 2006
    Location
    Florida Keys
    Posts
    16,412
    Dr. Young,

    I have read about your work in various media for nearly that same decade. If you find my obtusity frustrating, imagine the frustration for myself and other paralysed people who sit in wheelchairs and wait for science to produce one single improvement in our physical condition. I hope this doesn't sound ungrateful. I truly admire you and other scientists for your dedication and the body of your work. But I hope you can forgive me for saying that, in my mind, your plan does not contain the elements I described in my question.

    Again, I am talking about someone announcing a very specific goal of sensory and/or motor return, creating a budget with a hard dollar figure needed for implementation, and projecting a date certain that will see its real world application in humans.

    Such an effort may likely fall short of its stated goals. As a scientist, you may hold such a course to be irresponsible. But the attempt could energise the cure movement in the same way that the bold vision for the American space program articulated by President Kennedy moved that dream to become reality. How many school children took upon the path of science because a President had the balls to challenge a nation to accomplish a specific goal by a specific date? Remember that this national mandate came at a time that the primitive Sputnik satellite seemed like magic and science fiction to the majority of Americans, including the congress.

    I do understand that a clinical trial network such as the one you are working on is a necessary element in such an effort.


    Quote Originally Posted by Wise Young
    Foolish Old,

    It is very frustrating to me that you should ask this question. I have been posting about THE PLAN for nearly a decade. If you can't tell me what this plan is, I give up.

    Just in case you missed it, the plan has the following elements.
    • Many promising therapies have been reported to regenerate and remyelinate the spinal cord. These therapies need to be tested in rigorous clinical trials in people with chronic spinal cord injury.
    • Combination therapies will be required for the best results. These include therapies that can provide a cellular bridge across the injury site, a sustained source of growth factors, and blockade of growth inhibitors that prevent regeneration.
    • The only way to test therapies efficiently in people is to have clinical trial networks that can continually and efficiently test these therapies in large numbers of people. Such networks would also encourage industry investment into testing therapies.
    • In the meantime, there must be continued NIH and other funding to improve therapies and provide a pipeline of therapies of the clinical trials. The therapies that we have currently are not ideal and they can and should be continually improved. New therapies must be developed.
    I do not believe that embryonic stem cells are necessary or sufficient for the cure of spinal cord injury. On the other hand, I believe that study of embryonic stem cells will greatly accelerate development of cell sources that would be very important for spinal cord injury.

    Wise.
    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

  8. #88
    Quote Originally Posted by Foolish Old
    Dr. Young,

    I have read about your work in various media for nearly that same decade. If you find my obtusity frustrating, imagine the frustration for myself and other paralysed people who sit in wheelchairs and wait for science to produce one single improvement in our physical condition. I hope this doesn't sound ungrateful. I truly admire you and other scientists for your dedication and the body of your work. But I hope you can forgive me for saying that, in my mind, your plan does not contain the elements I described in my question.

    Again, I am talking about someone announcing a very specific goal of sensory and/or motor return, creating a budget with a hard dollar figure needed for implementation, and projecting a date certain that will see its real world application in humans.

    Such an effort may likely fall short of its stated goals. As a scientist, you may hold such a course to be irresponsible. But the attempt could energise the cure movement in the same way that the bold vision for the American space program articulated by President Kennedy moved that dream to become reality. How many school children took upon the path of science because a President had the balls to challenge a nation to accomplish a specific goal by a specific date? Remember that this national mandate came at a time that the primitive Sputnik satellite seemed like magic and science fiction to the majority of Americans, including the congress.

    I do understand that a clinical trial network such as the one you are working on is a necessary element in such an effort.
    FO,

    In my opinion, proposing and implementing such a plan would be divisive and dissipate the already scattered attention and energy of the community. But, more important, I believe that it is bad policy to prioritize future science based on limited data at any given time. Such plans have always backfired on us because nobody has a crystal ball to see the future. The main reason why American science has been so dominant and so successful is because the NIH and NSF established the policy of rigorous peer review by the best scientists.

    Each scientist has his or her opinion about which therapy is most likely to succeed. That is what they write their grants to propose and what the peer-review committees have to decide to fund based on the best science and feasibility. The field is changing so fast that no plan would be appropriate. What we do know is that clinical trials are needed to test many promising therapies that have been identified from animal studies. We also know that the basic research must be funded so that we will have a continued pipeline of therapies to test in clinical trials. This is the path to the cure.

    The NIH budget for spinal cord injury research has been cut by over 25% in the past two years. Spinal cord injury clinical trials are desperately needed here in the United States. We have had no major new clinical trials of any spinal cord injury therapy started in the past five years in the United States. People should be expressing their outrage to their representatives about this before the upcoming election. If they don't do the right thing, they do not deserve our vote.

    Do you really think that we have not been able to get the Christopher and Dana Reeve Paralysis Act passed for the lack of a plan or hard dollar figures? The plan is to create six centers dedicated to testing therapies to reverse paralysis. It is asking for $100 million over three years to get this network started. Congress has not seen fit to pass even this small amount over the past five year. The reasons is because a majority of the spinal cord injury community has not pushed for this bill.

    I am reminded of a quotation that I recently saw in a book entitled "China Road" by Rob Gifford.
    Hope cannot be said to exist, nor can it be said not to exist. It is just like roads across the earth. For actually the earth has no roads to begin with... but when many people pass one way, a road is made. Lu Xun in "My Old Home", 1921."
    Wise.
    Last edited by Wise Young; 06-08-2007 at 09:03 AM.

  9. #89
    Senior Member Foolish Old's Avatar
    Join Date
    Jun 2006
    Location
    Florida Keys
    Posts
    16,412
    Quote Originally Posted by Wise Young
    FO, in my opinion, such a plan would be divisive and dissipate the already scattered attention and energy of the community. But, more important, I believe that it is bad policy to prioritize future science based on limited data at any given time. Such plans have always backfired on us because nobody has a crystal ball to see the future. The main reason why American science has been so dominant and so successful is because the NIH and NSF established the policy of rigorous peer review by the best scientists. What they fund is constantly changing.

    Unfortunately, the peer-review system was never designed to fund grants in the 10-20th percentile zone. The grant applications that end up in the 10-20th percentile zones are necessarily non-controversial and non-risky. If there is any risk in the science, it generally will not get the highest priority scores. That is why the current system is not working as well.

    Over the past six years, we have had 20th funding or lower for most NIH grants over the past six years. This means that only the most conservative science is being funded. This trend was most clearly expressed by a statistic that came out last year. Less than 5% of the scientists who received NIH R01 grants (investigator initiated individual grants) were under age 42. This suggests that only older established investigators with a track record of productivity are being funded and young investigators are being left out in the cold.

    Each scientist has their opinion about which therapy is most likely to succeed. That is what they write their grants to propose and what the peer-review committees have to decide to fund based on the best science and feasibility. The field is changing so fast that no plan would be appropriate.

    Wise.
    The caution (timidity?) of the American scientific establishment explains the willingness of desperate people to place their fate and fortune in the hands of foreign charlatans. In the minds of many paralysed people, there is little real hope being offered by reputable scientists. I know you are as eager for a cure(s) as any AB, and do all you can to make cure(s) a reality. I also appreciate that most of the time you are sympathetic to the impatience, criticism, skepticism and pessimism of paralysed people.

    I see parallels between the conservatism of NIH grants and the major music labels. Big labels put their money behind proven veteran producers like The Rolling Stones, while innovative young bands wither for lack of promotion dollars. Fortunately, recent advances in technology and web media culture provide alternative avenues for recording and promotion. The most successful of these underground bands will likely receive the monetary support that will grant them mass audiences.

    Where is the SCI research underground that can give support to innovative young scientists before they leave the field?
    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

  10. #90
    Quote Originally Posted by Foolish Old
    The caution (timidity?) of the American scientific establishment explains the willingness of desperate people to place their fate and fortune in the hands of foreign charlatans. In the minds of many paralysed people, there is little real hope being offered by reputable scientists. I know you are as eager for a cure(s) as any AB, and do all you can to make cure(s) a reality. I also appreciate that most of the time you are sympathetic to the impatience, criticism, skepticism and pessimism of paralysed people.

    I see parallels between the conservatism of NIH grants and the major music labels. Big labels put their money behind proven veteran producers like The Rolling Stones, while innovative young bands wither for lack of promotion dollars. Fortunately, recent advances in technology and web media culture provide alternative avenues for recording and promotion. The most successful of these underground bands will likely receive the monetary support that will grant them mass audiences.

    Where is the SCI research underground that can give support to innovative young scientists before they leave the field?

    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.

Similar Threads

  1. Patients Lose Access to Neurological Care
    By Max in forum General News
    Replies: 1
    Last Post: 06-09-2003, 02:54 AM
  2. Lose weight to help a mate (SCI)
    By antiquity in forum Ability & Disability News
    Replies: 0
    Last Post: 02-17-2003, 06:01 PM
  3. Think, visualize to lose weight
    By Max in forum Health & Science News
    Replies: 0
    Last Post: 09-04-2002, 12:46 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •