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Thread: ChinaSCINET, On Schedule?

  1. #41

    Why not a new march of dimes?

    Quote Originally Posted by Susan Fajt
    very interesting i must say...(i am sleepy so bare with me here)

    Ok, so if the problem lies in needing funds then i must ask you Dr. Young if you could use your fame, recognition, influence and credentials involving stem cells and research to raise awareness across the United States of America to plead with the citizens of our country to help you solve this problem which involves unbelievble suffering to be cured. I believe that our nation cares enough to contibute to such a worthy cause and this must be shared into people who *will* help if asked and believe in all that you believe in. Please understand that people do care and coming out of your mouth is imparative due to the fact that you are a great scientist. Tell America that you want to find a cure on national TV and plead for compainies to believe in us, we deserve it!!! With this being said, i believe anything is possible. We must *try* with every tool imaginable and our neighbors/strangers will do the right thing. I must ask, have you gone public with all that you write about and how your community is being let down due to money issues? It is very sad. I must also agree with Faye in her words saying that sometimes fewer is better than more due to the fact that 600 rats that show nothing of recovery could slow things down much more, why not try 6 rats or 60 rats and then decide if it should go to 600? Also, if it does work on rats then what, do you then move forward using 600 genieu pigs and then to 600 primates? I appologize if you feel i am badgering you, i am simply curious/paranoid because i have undergone some aweful situations since this catastrophic injury. promise. One more thing that stirkes me as bizarre is that only 20 million is granted for ESCR and 24 million is being used for lithium trials. Please help me understand as it doesn't make sense. Oh yeah, Dr. Lima also made a guinea pig walk/run and is still using this approach on humans when it simply does not work. I vote for Dr. Young to go public and become very famous for trying his absolute best to convience the world that the impossible is possible with money and not to much time. We must do something that either already works on rats/cats/primates or else we are looking at possibly finding a cure in the next _________ years. (sigh) I will do anything to help you Dr. Young, just help me understand what will help us. thanks.

    Susan,
    why doesnt Wise Young and all of us, or better all of you in the States, organize something like this thing Roosevelt did in the '30s? (see below from Wikipedia). Today it should be a 1 dollar march, or even a 10 dollar march, but it could be done.
    Let's go for it!!

    March of Dimes is the name of health charities in both the United States and Canada. In the United States the March of Dimes is a national voluntary health charity founded in 1938 by United States President Franklin Delano Roosevelt as the National Foundation for Infantile Paralysis to defeat the epidemic disease polio, which killed or paralyzed thousands of Americans during the first half of the 20th century. Roosevelt himself was paralyzed with what at the time was believed to be polio, though it now seems this diagnosis was mistaken.
    The original purpose was to raise money for polio research and to care for those suffering from the disease. The name emphasized the national, nonpartisan, and public nature of the new organization, as opposed to private foundations established by wealthy families. The effort began with a radio appeal, asking everyone in the nation to contribute a dime (10 cents) to fight polio. The name "March of Dimes" for the fundraising campaign was coined by entertainer Eddie Cantor as a play on the popular newsreel feature of the day, The March of Time. Along with Cantor, many top Hollywood, Broadway, radio, and television stars served as promoters of the charity. Because of his close association with the cause, Roosevelt was portrayed on the U.S. dime after his death

  2. #42
    Quote Originally Posted by Faye
    It is a waste of time to put something through a large clinical trial when after several tries it hasn't produced any really significant results.
    Would you mind elaborating on the "several tries" that have already been attempted and failed?
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  3. #43
    Banned Faye's Avatar
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    Quote Originally Posted by Steven Edwards
    Would you mind elaborating on the "several tries" that have already been attempted and failed?
    I'm sure you appreciate the concept of not wasting any further money on a treatment which after 10 or so tries, repeating the very same procedure, hasn't resulted in an appreciable change in condition to the patient.

    Problem is, there is often a vested interest in showing results when there are none.( whether a trial is small or large). But at least it's easier to abandon a smaller and "not sufficiently effective" trial, than a larger trial in which much ego's and financial accountability is involved.

    Smaller trials speed up discovery by being able to move on to something better sooner, instead of wasting more time and money on something that has only marginal usefulness.

    Problem always will be "if you torture the numbers enough, they'll confess to just about anything" .

    We've got to be watchful to that whether it's a small or a large trial.

    "There’s far too much unthinking respect given to authority,” Molly Ivins explained; “What you need is sustained outrage.”
    Kerr, Keirstead, McDonald, Stice and Jun Yan courageously work on ESCR to Cure SCI.

    Divisiveness comes from not following Christopher Reeve's ESCR lead.
    Young does ASCR.
    [I]I do not tear down CRPA, I ONLY make peopl

  4. #44
    Banned Faye's Avatar
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    Quote Originally Posted by Faye
    Well small trials have been undertaken right here in the US for SCI and successfully led to ODA approval issued by the FDA for Cethrin:

    http://sci.rutgers.edu/forum/showpos...7&postcount=84

    Since I am an economist ( former adjunct professor at Brenau University among other faculty experience, and prior planning analyst for major medical corporations ), who is most concerned with the efficient use of limited resources ( the definition of economics), I can assure everyone here that large is not necessarily better.

    It is a waste of time to put something through a large clinical trial when after several tries it hasn't produced any really significant results. It's no better than what Dr. Lima and Huang continue to do: Hundreds of people are getting the same treatment, even though we already know it doesn't work much at all and people are wasting their money.

    Except of course for people with ALS, who may get a few more months out of their lives.
    The trial for cethrin invloved 37 people.
    Last edited by Faye; 01-29-2007 at 11:19 PM.

    "There’s far too much unthinking respect given to authority,” Molly Ivins explained; “What you need is sustained outrage.”
    Kerr, Keirstead, McDonald, Stice and Jun Yan courageously work on ESCR to Cure SCI.

    Divisiveness comes from not following Christopher Reeve's ESCR lead.
    Young does ASCR.
    [I]I do not tear down CRPA, I ONLY make peopl

  5. #45
    Quote Originally Posted by Faye
    I'm sure you appreciate the concept of not wasting any further money on a treatment which after 10 or so tries, repeating the very same procedure, hasn't resulted in an appreciable change in condition to the patient.
    I would, but where have the trials been carried out previously? That's what I'm asking.
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  6. #46
    Steven,

    I believe Faye is speaking of Dr. Lima's procedure. I was the thrid patient out of the USA and the 11th in the world to undergo this, therefore i speak from the 'horses mouth' knowing that over 75 patients have undergone the same procedure and *nobody* is unparalyzed.. His procedure continues to take money from those who are desperate to *try* anything that *might* help them to one day walk again or recover something substancial, it simply is wrong. I was told i would walk again because a guinea pig did.. Common sense comes into play at this point in time and the therapy should be stopped and growth factors should be added before continuing onto more patients that want there lives back! I too am looking at the Romanians and the work they are using with umbilical cord blood stem cells and it appears to be helping the patients, i am in touch with them first hand btw.

    TomassoSr. Godbless you buddy. This is most definatly something worth putting together as a community, we *must* do something to let the US know how serious we are, no matter how few number we have.. Alot of people do care and would join march knowing that they too are making a movement that just might get the attention needed to keep moving forward. We really need some colloboration in efforts for this to get the noise loud and clear into all the homes throughout our great nation. Gotta dream it to see it happen.
    Dr. Young what are your thoughts on this endeavor? Has it ever been done before and if not then it is high time to help our scientists as we are the ones who need them in order for us to be cured, i really don't want to die like this, it is absolutly unacceptable in the world in which we live.. Just to think of all the amazing things that are done to keep the human body alive are mind blowing! I am honestly suprised that in the year 2007 we are still living with a question mark because no scientist has yet unraveled the mystery of fixing a **very** important nerve. (shaking my head in disbelief). If our Pres. daughter had a SCI the cure would be found within a week or less..
    Faye, your thoughts make very good sense and i can only look forward to working together one day sooner rather than later. You always seem to suprise me with your knowledge and persistance...
    Godbless everybody! I have quite a few good contacts that i am positive that would get this onto national tv!!! Let the good times roll~

    I was asked by Oprah to attend her show, however it was impossible at that time due to the fact that i chose to go infront of the senate in hopes of funding for SCI. She is a very strong advocate also and i would will re-contact her soon. Everyone should try and push for media exposure during these times, we deserve for our voices to be heard. I realize how difficult it is to do something like this, but we have no choice but to try even if we do piss on people, literally.. This is absolutly a disgrace to allow such human suffering to continue for however many years it takes for the scientists to get the money they need. I am not certain how long the have been trying to figure out how to regenerate a spinal cord but it is taking a *long* time!!

    Could we complile a list of heavy hitters that are also paralyzed in efforts to move effectivly into human clinical trials, perhaps they might care a little more.. no pun intended to the scientists who are not, but it would be interesting if they might move a little faster with there rats into humans if it where them... I know I never faught for a cure for SCI until i had one. My bad, perhaps in the next lifetime if we don't take these opportunties at hand.
    Godspeed~
    Susan
    www.sciwalker.com

  7. #47
    Quote Originally Posted by Susan Fajt

    I was asked by Oprah to attend her show, however it was impossible at that time due to the fact that i chose to go infront of the senate in hopes of funding for SCI. She is a very strong advocate also and i would will re-contact her soon. Everyone should try and push for media exposure during these times, we deserve for our voices to be heard.
    I completely agree; If you can get onto Oprah, I think that would be huge since you would be tageting the perfect audience- I hate to generalize, BTW- mothers, who would hate to see or think of something like this happen to one of their children. Since you say Oprah is an advocate for something like this, your testimony and Oprah's unmatched talent for convincing her audience would be a knockout punch.

    I think I heard somewhere that she felt generous one day and gave everyone in her audience a new car...
    No one ever became unsuccessful by helping others out

  8. #48

    Lightbulb

    Tuflehundle,

    You are right.. I will *not* give up hope, i have earned the right to have it damit.. I see this as a chess match and the time has came to play hard ball and get *check mate* locked in. No more time for talk as it is cheap! If it is my destiny to die with this disgusting injury then so be it, but i will leave this place knowing i *never* gave up what i believed in! I better hurry up and finish my book before i contact Oprah. (it just might make it to the best seller) lol & kidding a little.. I will get on it.
    Godspeed~
    Susan
    www.sciwalker.com

  9. #49
    Senior Member Schmeky's Avatar
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    Susan,

    You had Lima's unproven, ineffective procedure done. Despiration is a poor decision making model.

    You state Oprah has invited you to be on her TV program. She has already had a few SCI's on her show, including Joy Veron. She is not interested in our/your plight, just ratings.

    You give the impression you are on a cure finding mission, when in fact, the cure has nothing to do with you.

    You're not going to *find* a cure, when it happens, it will find you. There is no way you can encircle the globe keeping your finger on the pulse of research.

  10. #50
    http://www.oprah.com/tows/slide/2004...40607_03.jhtml

    Yep, Joy Veron was on Oprah, link above. She is an awesome advocate. Didn't she have Lima's procedure done too?

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