Page 2 of 6 FirstFirst 123456 LastLast
Results 11 to 20 of 53

Thread: W2W a few weeks later

  1. #11
    Quote Originally Posted by LetsGo View Post
    Paolo, with all due respect you are wrong. What you are referencing is Dr. Dietrich saying that the first patients for the Schwann cell trial will be on acutes. That does not mean they are not conducting research on chronic injuries. THEY ARE.

    First, the schwann cell trials are only 1 aspect of The Miami Project's research programs. You can't confuse the schwann cell trials with the only research they are conducting. Too many do this and it's flat out wrong.

    Second, Dr. Dietrich said they will also be conducting the schwann cell trials on chronic injuries, just not until the first 8-10 acute patients have been treated. Just because they are starting with acute injuries doesn't mean that they are not conducting ongoing research on chronic injuries. They are.

    Third, Dr. Pearse who is one of the lead scientists on the schwann cell trial research is also conducting research using OEG cells, schwann cells, IL-10, and methylprednisolone specially for chronics. I also know he has aother ongoing studies with different combination approaches to treating chronic injuries. Again - just because the surgeries are starting with acute doesn't mean chronic research isn't ongoing.

    Fourth, everyone needs to stop bashing The Miami Project and their efforts to begin with actutes. There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics. If the scientific field worldwide could do this, they would. Obviously there is a reason EVERYONE is starting with acute injuries but that doesn't mean chronic research isn't being done simultaniously.

    Fifth, can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.

    Sixth, I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not doing this is disheartening.

    Seventh, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit. Marc is a high level quad who has the same bowel and bladder problems, infections, depression and everything other emotion that has come with not being able to walk. He has dedicated his life to raising money to find this cure. You may not agree with their science but to say he hasn't done more to bring the field of spinal cord injury research foward is so insulting. Who are you to be attacking someone like that?

    Finally, instead of beating up on organizations that raise a lot of money for research. Look at cancer and AIDS and the billions that have been spent but the research didn't lead to cure but no one attacks their scientists for "wasted" money. People are happy to keep the research going. Because Susan G. Koman has raised billions they are a worthless organization like The Miami Project. There is no logic to that line of thought.

    Maybe, instead of attacking the organization that are successful in raising money, it would be better to push all the other research organizations to hire more staff who specialize in fundraising so they can increase the rate at which they conduct their research. There is enough money in this world for everyone. How The Miami Project raises money should be a case study for every other organization. They are great at it and they've moved this field forward faster than one other organization in the world. They have trained more scientists who work for other educational institutions than any other organization in the world. They publish more papers than any other organization in the world.

    People praise the Christopher Reeve folks when they get "big-name" celebrities to their events but if The Miami Project gets a celebrity it's a bad thing. You want to replicate what is successful. Why not encourage Dr. Silver and everyone else to hire more fundraisers. If they are good, they pay for their own salary and pay for those labs to be able to expand their research programs.

    I haven't been on these board in many years and seeing these postings reminds me why I don't come here. The negativity, anger, attacks are so disgraceful. I hope no scientists read these blogs b/c to infer that they are in this field to "perpetuate" a career is sickening. If they actually read some of these comments in general they would probablly leave the field and research another disease where the people actually support them. Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.
    Good points LetsGo - I actually think Miami Project could be on to something (I think it has been researched exhaustively) - I'm just scared at how long it will take to get to the clinic - 5 years rather than 10 please

  2. #12
    I undestand your frustration. But everyone needs to stop focusing on how long it is going to take. The truth is no one knows. It might be next year or it could be 10 years. Isn't it better to look at how can we move the field foward the fastest? I'm HIV+, so while its not the same as being paralyzed by any means, I can understand the frustrations that go with a time frame.

  3. #13
    Quote Originally Posted by LetsGo View Post
    Paolo, with all due respect you are wrong. What you are referencing is Dr. Dietrich saying that the first patients for the Schwann cell trial will be on acutes. That does not mean they are not conducting research on chronic injuries. THEY ARE.

    First, the schwann cell trials are only 1 aspect of The Miami Project's research programs. You can't confuse the schwann cell trials with the only research they are conducting. Too many do this and it's flat out wrong.

    Second, Dr. Dietrich said they will also be conducting the schwann cell trials on chronic injuries, just not until the first 8-10 acute patients have been treated. Just because they are starting with acute injuries doesn't mean that they are not conducting ongoing research on chronic injuries. They have and are. They are testing all types of animal models in both the acute and chronic setting. I think you need to accept that the biology of repairing the nervous system is much more complex than in acutes but that most scientists test their studies in both.

    Third, Dr. Pearse who is one of the lead scientists on the schwann cell trial research is also conducting research using OEG cells, schwann cells, IL-10, and methylprednisolone specially for chronics. I also know he has aother ongoing studies with different combination approaches to treating chronic injuries. Again - just because the surgeries are starting with acute doesn't mean chronic research isn't ongoing.

    Fourth, everyone needs to stop bashing The Miami Project and their efforts to begin with actutes. There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics. If the scientific field worldwide could do this, they would. Obviously there is a reason EVERYONE is starting with acute injuries but that doesn't mean chronic research isn't being done simultaniously.

    Fifth, can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.

    Sixth, I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not conducting chronic research is disheartening.

    Seventh, Ineedmyelin, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit. Marc is a high level quad who has the same bowel and bladder problems, infections, depression and everything other emotion that has come with not being able to walk. He has dedicated his life to raising money to find this cure. You may not agree with their science but to say he hasn't done more to bring the field of spinal cord injury research foward is so insulting. Who are you to be attacking someone like that? How do you know what his financial situation is? How do you know what his health is like? Do you spend time with him? Have you dedicated your life to exclusively raising money and running an organization for SCI research? Marc has chosen this as his task and destiny. He has accepted this as what he wanted to do with his life. He wasn't forced into this. It's by choice and he has given his life to this and doesn't sit on these blogs writing and complaining about those people who are paralyzed. He is raising money to actually try to cure it. You may not agree with where they spend their money but to attack his commitment to helping you and millions others is beyond pale.

    Finally, instead of beating up on organizations that raise a lot of money for research we should encourage others to emulate them. Look at cancer and AIDS and the billions that have been spent but the research didn't lead to cure. No one attacks their scientists for "wasting" money. Most scientific hypothsis never come to fruition. It's money you have to spend to get to the place where maybe a few therapies might emerge that can be effective. People are happy to keep cancer research going. Under your logic,Susan G. Koman who has raised billions should be shut down because they have found a cure to most cancers. They are a worthless organization like The Miami Project, right? There is no logic to that line of thought.

    Maybe, instead of attacking the organization that are successful in raising money, it would be better to push all the other research organizations to hire more staff who specialize in fundraising so they can increase the rate at which they conduct their research. There is enough money in this world for everyone. How The Miami Project raises money should be a case study for every other organization. They are great at it and they've moved this field forward faster than one other organization in the world. They have trained more scientists who work for other educational institutions than any other organization in the world. They publish more papers than any other organization in the world. They have helped lay out the foundation for the biology of the body so that new scientists can enter this field and not have to start the beginning. It is how science progresses for all diseases.

    People praise the Christopher Reeve folks when they get "big-name" celebrities to their events but if The Miami Project gets a celebrity it's a bad thing. You want to replicate what is successful. Why not encourage Dr. Silver and everyone else to hire more fundraisers. If they are good, they pay for their own salary and pay for those labs to be able to expand their research programs.

    I haven't been on these board in many years and seeing these postings reminds me why I don't come here. The negativity, anger, attacks are so disgraceful. I hope no scientists read these blogs b/c to infer that they are in this field to "perpetuate" a career is sickening. If they actually read some of these comments in general they would probablly leave the field and research another disease where the people actually support them. Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.
    Thank you for this LetsGo.

  4. #14
    ineedmyelin, please chill out

  5. #15
    Quote Originally Posted by Jim View Post
    ineedmyelin, please chill out
    Jim, i'm in total chill mode.

    i for one will not bash anymore. its unproductive and a waste of time. i appreciate each and every dr thats involved in finding therapies that might help us acutes and chronics. i also know first hand how important CARE is if we hope to one day take part in a CURE therapy.

    i propose that instead of arguing that we as a community start comming up with ideas that we can act on in the coming year, 2012.

    on a personal level i will work hard to attend w2w next year.
    as an idea, i think we should consider organizing a trip to washington dc, to meet with those congressmen and congresswomen that are willing to listen to us.

    we need to push for more nih funding. i know money/national budget is a huge obstacle right now but congress needs to understand how important it is to invest in science that could eventually lead to cures. its in everyones interest and benefit to cure some of the most costly and debilitating diseases, conditions.

    an infrastructure is now in place thanks to Dr Young with scinet. as a community we need to come together and constructively push for funds as well as any and all promising therapies.

    conferences like w2w are great but it seems that once the meeting are over and everyones returns to thier home that buzz/excitement seems to die down a bit. not saying that nothing good comes from these conferences just think that we more of a year long agenda so as not to lose the momentum. we can take the bull by the horns, we just shouldn't let go for a minute.

    i recently saw a documentry on pbs called "Lives Worth Living". there were people with all types of disabilities fighting for their civil rights. one of the more vocal leaders was a paralyzed man in an iron lung. this man got things done by using his mind and his voice! these warriors did what they had to do and that is why the ADA bill was passed.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  6. #16
    Quote Originally Posted by LetsGo View Post
    There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics.
    There are several trials for chronic injuries. You are just not aware of them.
    http://unite2fightparalysis.org/clinicaltrials

    Quote Originally Posted by LetsGo View Post
    Paolo, with all due respect you are wrong...can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.
    I think that many people would agree that Paolo's understanding of the situation is quite clear. If you are concerned about people getting their facts straight before making inaccurate statements, please refer to your quote regarding chronic trials referenced above.

    Quote Originally Posted by LetsGo View Post
    I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not conducting chronic research is disheartening.
    I would bet a lot of money that Dr. Silver's research gets to clinical trials on chronic injuries before anything coming from MP. To think what he or Wise or a few other more promising researchers could have accomplished with $250 million. I would probably not be typing this right now. THAT is disheartening.

    Quote Originally Posted by LetsGo View Post
    Seventh, Ineedmyelin, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit. You may not agree with where they spend their money but to attack his commitment to helping you and millions others is beyond pale.
    If Marc or Rick know how the researchers at their organizations are getting leapfrogged in the race to develop therapies, they would make big changes in the way that money is spent. If they are aware and are either complacent or complicit, that would be beyond the pale

    Quote Originally Posted by LetsGo View Post
    Look at cancer and AIDS and the billions that have been spent but the research didn't lead to cure. No one attacks their scientists for "wasting" money... People are happy to keep cancer research going. Under your logic,Susan G. Koman who has raised billions should be shut down because they have found a cure to most cancers. They are a worthless organization like The Miami Project, right? There is no logic to that line of thought.
    Millions of people with cancer and HIV are living active and relatively normal lives with relatively normal lifespans. Magic Johnson, Greg Louganis, Lance Armstrong, Sheryl Crow, Scott Hamilton, the list goes on and on. To keep promoting organizations like MP or RHF when they have produced almost no tangible results is illogical.


    Quote Originally Posted by LetsGo View Post
    There is enough money in this world for everyone.
    That was just so asinine that it deserved a second read...

    Quote Originally Posted by LetsGo View Post
    People praise the Christopher Reeve folks when they get "big-name" celebrities to their events but if The Miami Project gets a celebrity it's a bad thing. You want to replicate what is successful. Why not encourage Dr. Silver and everyone else to hire more fundraisers. If they are good, they pay for their own salary and pay for those labs to be able to expand their research programs.
    Not to defend CDRF, but they only spend 12.4% of their income on fund raising. MP spends 26.9%
    http://www.charitynavigator.org/inde...summary&orgid=5066
    http://www.charitynavigator.org/inde...ary&orgid=7876
    And are you suggesting that one should aspire to the "success" that is the Miami Project or RHF? People should be encouraged to donate to the most promising researchers, not the ones with the best poster boys.

    Quote Originally Posted by LetsGo View Post
    Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.
    If people did this MP and RHF would not be operating right now.
    Last edited by KofQ; 11-07-2011 at 03:28 PM. Reason: broken links

  7. #17
    Thank you for this, KofQ.

  8. #18
    Quote Originally Posted by ineedmyelin View Post
    on a personal level i will work hard to attend w2w next year.

    conferences like w2w are great but it seems that once the meeting are over and everyones returns to thier home that buzz/excitement seems to die down a bit. not saying that nothing good comes from these conferences just think that we more of a year long agenda so as not to lose the momentum. we can take the bull by the horns, we just shouldn't let go for a minute.
    I do hope you are able to attend the conference next year.

    Researchers, advocates, sci folks and spinal cord injury organizations from all over the world attend the conference. It lays the groundwork and proposed agendas for dozens of the groups that are working on efforts and activities for 2012. The momentum isn't lost, in fact it reinvigorates and lays focus on the next years agendas for the cure of spinal cord injury. In addition, warriors went to capital hill to begin the push for the ARM bill. They continue to work on that every day.
    Last edited by GRAMMY; 11-07-2011 at 03:17 PM.

  9. #19
    We shouldn't be looking forward to each year's W2W rally - we should look to make them redundant - it is the image of years and years of these rallies stretching out in front of me as I get old that scares me, just like the years since my accident have slipped away

  10. #20
    Quote Originally Posted by Christopher Paddon View Post
    Good points LetsGo - I actually think Miami Project could be on to something (I think it has been researched exhaustively) - I'm just scared at how long it will take to get to the clinic - 5 years rather than 10 please
    Would the sci community be better off to just send donations to MP and not hold the Working 2 Walk conference then?

Similar Threads

  1. Going on hol in 2 weeks
    By knightrider in forum Recreation, Sports, Travel, & Hobbies
    Replies: 1
    Last Post: 10-09-2006, 04:36 PM
  2. Ever have one of those weeks??
    By LauraD in forum Life
    Replies: 4
    Last Post: 05-10-2002, 09:16 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
  •