Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 30

Thread: Where Are the Cures?

  1. #11
    I hear you, this is one of my not so good days and I had to get that out. Thanks for helping me get my focus back.

  2. #12
    Senior Member
    Join Date
    Jun 2005
    Location
    Norway
    Posts
    17,427
    Quote Originally Posted by Han Solo View Post
    I hear you, this is one of my not so good days and I had to get that out. Thanks for helping me get my focus back.
    I think we are entitled to be fed up and pissed from time to time. I also think it is healthy to blow some steam. And you are right; this SCI thing is big shit. But don’t give away you’re own money. There are ways to get money and support from other channels if we look hard enough. Last week a few of us over here managed to get around 430 thousand US dollars from such sources (and we are after more). You’re own money, you and you’re family will need. And sorry for you having a bad day. But keep at it.

  3. #13
    Heads up Han! theDarthofhopelessness, is getting a lightsaber so far up his .....
    Sooner than we think!

  4. #14
    Senior Member
    Join Date
    Feb 2006
    Location
    Murrieta, Ca.
    Posts
    424
    Did you guys read that? It's something I have felt for years now, most research groups don't have the ability to move a project from discovery to real medicine that is needed and useful. The whole system is set up to support research not a cure, The government, univeristies and the PRIVATE FOUNDATIONS, enough is enough.

    The private foundation funding should be going to move all ready existing "discoveries" to a "cure" no one else is going to do it. Why spend more on research when there is stuff layinfg around in dusty folders that's proven to work....I'm mad and frustrated as hell. Have you read the post by Steve Edwards that lists all the on going research? I bet 99.9% of that never leaves the lab.This has to change.

    I've said it before and I'll say it again, Hans Kierstead is the man, a true Maverick, he's going to make a huge difference, watch and see. He should be getting every dime we can throw at him, he has the ability to do what most can't and that's to get a treatment to you......

  5. #15
    Senior Member Schmeky's Avatar
    Join Date
    Sep 2002
    Location
    West Monroe, LA, USA
    Posts
    3,405
    Quote Originally Posted by rjames
    Did you guys read that? It's something I have felt for years now, most research groups don't have the ability to move a project from discovery to real medicine that is needed and useful. The whole system is set up to support research not a cure, The government, univeristies and the PRIVATE FOUNDATIONS, enough is enough.

    The private foundation funding should be going to move all ready existing "discoveries" to a "cure" no one else is going to do it. Why spend more on research when there is stuff layinfg around in dusty folders that's proven to work....I'm mad and frustrated as hell. Have you read the post by Steve Edwards that lists all the on going research? I bet 99.9% of that never leaves the lab.This has to change.

    I've said it before and I'll say it again, Hans Kierstead is the man, a true Maverick, he's going to make a huge difference, watch and see. He should be getting every dime we can throw at him, he has the ability to do what most can't and that's to get a treatment to you......
    The problem(s) is the chasm/abyss from the lab to clinical trials, a major problem. Rick is the watchdog over Hans, and he knows what he's talking about. Hope others are listening.

  6. #16
    It is so frustrating to read this thread because it feels as if people are rediscovering the wheel. Let me re-iterate some information that I have been posting for the last few years.

    1. There is currently little or no federal funding for spinal cord injury clinical trials and it has been this way for the past 6 years.
    2. NIH does fund clinical trials for cancer, AIDS, cardiac, and other conditions, but not for spinal cord injury.
    3. Several companies and foundations are raising money for clinical trials but the economic climate is not good for fundraising;
    4. Some scientists are calling for clinical trials to test therapies that they have discovered but few have ever organized a clinical trial.
    5. Clinicians do clinical trials. They unfortunately are so busy that they seldom have the time to organize or even participate in clinical trials.
    6. Most companies that are thinking of doing clinical trials in spinal cord injury do not have the experience nor funding to do such trials.


    Let me give some good news to counter all this negativity. First, the upcoming Congress hopefully will pass the Christopher and Dana Reeve Paralysis Act (CDRPA), which should target some funding at NIH to spinal cord injury clinical trials. Many members of this community have worked very hard during the past 4 years to make this happen and we should be proud. Second, clinicians are interested in doing spinal cord injury clinical trial and have been traveling to China and organizing their own clinical trial networks. This is good. Third, there are many therapies to test in clinical trial. We didn't have as many therapies before. Fourth, several big companies are getting involved in spinal cord injury clinical trials, including Novartis, Biogen, Pfizer, and others. If Acorda gets Fampridine approved, it will be the first company to have gotten a chronic spinal cord injury approved to to make money from it, a fact that will attract more companies to the field.

    We need to push as hard as we can to get the CDRPA passed with as much funding as possible and encourage clinicians to participate in clinical trials for all the exciting new therapies. We can sit and moan in our soup or work hard to do something with what we have.

    Wise.

  7. #17
    why not take those promising therapies offshore and apply them to people now?

  8. #18
    Senior Member ChipS's Avatar
    Join Date
    Oct 2008
    Location
    Stone Creek, Ohio
    Posts
    658
    Quote Originally Posted by Wise Young View Post
    It is so frustrating to read this thread because it feels as if people are rediscovering the wheel. Let me re-iterate some information that I have been posting for the last few years.

    1. There is currently little or no federal funding for spinal cord injury clinical trials and it has been this way for the past 6 years.
    2. NIH does fund clinical trials for cancer, AIDS, cardiac, and other conditions, but not for spinal cord injury.
    3. Several companies and foundations are raising money for clinical trials but the economic climate is not good for fundraising;
    4. Some scientists are calling for clinical trials to test therapies that they have discovered but few have ever organized a clinical trial.
    5. Clinicians do clinical trials. They unfortunately are so busy that they seldom have the time to organize or even participate in clinical trials.
    6. Most companies that are thinking of doing clinical trials in spinal cord injury do not have the experience nor funding to do such trials.

    Let me give some good news to counter all this negativity. First, the upcoming Congress hopefully will pass the Christopher and Dana Reeve Paralysis Act (CDRPA), which should target some funding at NIH to spinal cord injury clinical trials. Many members of this community have worked very hard during the past 4 years to make this happen and we should be proud. Second, clinicians are interested in doing spinal cord injury clinical trial and have been traveling to China and organizing their own clinical trial networks. This is good. Third, there are many therapies to test in clinical trial. We didn't have as many therapies before. Fourth, several big companies are getting involved in spinal cord injury clinical trials, including Novartis, Biogen, Pfizer, and others. If Acorda gets Fampridine approved, it will be the first company to have gotten a chronic spinal cord injury approved to to make money from it, a fact that will attract more companies to the field.

    We need to push as hard as we can to get the CDRPA passed with as much funding as possible and encourage clinicians to participate in clinical trials for all the exciting new therapies. We can sit and moan in our soup or work hard to do something with what we have.

    Wise.
    I have a question. Suppose one were to try and organize a donation drive or even a perminent donation apparatus, where would be the best place to direct the funds? Cancer has the American Cancer Soiety, and the Komen foundation, ect..., but do we (SCI) have a similar organization (big name, easily recognizable) for such funding administration? If not, Why?

    Another question is; How can we convince people who are unfamilisr with SCI to put up funds? I would like to have something in the works that holds true promise of becoming a reality to use as an example of what is possible. Simply asking for money to sponser "research" without specifics, is likely going to be fruitless. Also, to suggest to most people to donate to any kind of stem cell research is risky, as it may alienate potential donators away from any funding our way due to the controversy surrounding this topic. The bottom line is, until science gives us something that laymen can actually grasp as a "cure" or "fix", our hopes of generating any substantial funding is bleak.

    I believe there are many potential industries that would like to lay claim to the funding for a specific cause, but most would be unwilling to do so unless there research dollars follow a steady influx of press. imagine if we could tap into the construction industry to make SCI research thier own "pet" cause. Specially colored hard hats (perhaps safety Orange), tape measures, safety vests, ect... Soon everyone would begin to associate that color with SCI and the quest for the cure. Every highway job would have thousands of people noticing these colors. I believe that is why breast cancer has been so successful at attracting doners...it's news worthy. Business', while generous, must still seek the wisest way to spend those dollars. And the best "bang for thier buck" is often breast cancer research. Just watch the news or read the paper for a myriad of products and t-shirts in pink. This is the critical element that is missing in SCI funding. It's about time we consider this as part of the future of our cause.

    Do we agree? or, am I just talkong into the wind?

  9. #19
    Quote Originally Posted by Eric.S View Post
    why not take those promising therapies offshore and apply them to people now?
    Eric,

    I want to dispel the notion that it is easy to move U.S. therapies offshore and apply them to people. I have been running clinical trials in China for several years now and things are neither easier nor faster here. In fact, there are a lot more Chinese regulations restricting U.S. drugs and products here in China than one has to deal with in the United States. It is easier to do clinical trials on U.S. products in the U.S. than it is to do the trials in China. For example, China does not allow phase 1 trials of any new drug or cells from the U.S. in China.

    Wise.

  10. #20
    Quote Originally Posted by Wise Young View Post
    Eric,

    I want to dispel the notion that it is easy to move U.S. therapies offshore and apply them to people. I have been running clinical trials in China for several years now and things are neither easier nor faster here. In fact, there are a lot more Chinese regulations restricting U.S. drugs and products here in China than one has to deal with in the United States. It is easier to do clinical trials on U.S. products in the U.S. than it is to do the trials in China. For example, China does not allow phase 1 trials of any new drug or cells from the U.S. in China.

    Wise.
    WOW! It's too bad they aren't as strict with things like food or
    pollution.

    I'm surprised to hear that though, with so many people going to Huang
    for stem cell treatments.

Similar Threads

  1. 262,800 Minutes
    By Steven Edwards in forum Funding, Legislation, & Advocacy
    Replies: 220
    Last Post: 03-15-2006, 10:56 AM
  2. Coalition For Lifesaving Cure Unveils TV Ads
    By Faye in forum Funding, Legislation, & Advocacy
    Replies: 1
    Last Post: 12-12-2005, 06:17 PM
  3. Replies: 2
    Last Post: 10-11-2005, 06:18 PM
  4. Replies: 2
    Last Post: 08-09-2004, 05:40 AM

Posting Permissions

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