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Thread: China SCI Network - Joint research ignites new hope for spinal cord injury patients

  1. #1
    Senior Member Max's Avatar
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    China SCI Network - Joint research ignites new hope for spinal cord injury patients

    Joint research ignites new hope for spinal cord injury patients

    www.chinaview.cn 2004-09-16 22:58:18


    HONG KONG, Sept. 16 (Xinhuanet) -- Ah Pun suffered from his first and second cervical spinal cord injury in an accident 13 years ago, which led to paralysis and breathing difficulty by himself.

    During the days that he cannot move freely, he gets used to waiting -- waiting for the assistance of others, waiting for the days and nights to pass by, waiting for the visit of his friends and his beloved family members, and waiting for the moment of death.

    "Having spent my life in paralysis for 13 years, I live like a parasite. The helpless endlessly brings me great pain and I would never have a hope to stand and walk again. I can do nothing but kill time," said Ah Pun.

    Hopeless Ah Pun wrote a letter to the government of the Hong Kong Special Administrative Region asking for euthanasia.

    Right at this moment, his hope was reignited when the University of Hong Kong (HKU) collaborates with experts from the Chinese mainland and the United States to set up the China Spinal Cord Injury Network to develop effective therapies for spinal cord injury (SCI) patients.


    http://news.xinhuanet.com/english/20...nt_1991731.htm

    [This message was edited by seneca on 09-18-04 at 12:00 AM.]

  2. #2
    Banned Faye's Avatar
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    WOW this must be some of Suzanne and Dr. Young's work they are refering to:
    China Spinal Cord Injury Network to develop effective therapies for spinal cord injury (SCI) patients.

    "We have a chance to take a giant stride forward for the good of all humanity" in the next election. "We can choose between the future and the past, between reason and ignorance, between true compassion and mere ideology."- Ron Reagan Jr.

  3. #3
    Senior Member Schmeky's Avatar
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    Hot D_mn. This is good news indeed. Dr. Young, can you speculate when combo therapies will be tried on humans in China?

    10's of thousands of SCI's a year in China alone. Wow, plus the rest of the world, kinda puts SCI in another perspective!

  4. #4
    Thanks Max.

    Yes, I think it is from Wise and Suzanne's work among others.

    Schmeky - I think the most recent numbers put the worldwide pop for sci at 8-10 million(I'm probably understating it). If we could only get them all together for a rally? A vote? A (no pun intended) sit-in?

    Our stories and plight need to be told. Over and over and over until the right ears are listening and correct, urgent action taken.

    Onward and upward!

  5. #5
    Senior Member Max's Avatar
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    Originally posted by Chris Chappell:

    Thanks Max.
    Always welcome, Chris!

  6. #6
    The China SCI Network was launched yesterday with a press conference at Hong Kong University. Six nodes will be inducted into the Network over the coming six months. Data collection will commence in March 2005 to validate the centers. The following is one of the press releases:

    Press Release: The China SCI Network

    Spinal cord injury has long been considered to be irreversible. For much of human history, doctors have told patients and families with spinal cord injury that they should not hope for therapies that will restore function. In the past decade, this has changed. Many animal studies have shown that the spinal cord can regenerate. Dozens of therapies have now been reported to improve recovery in animals and some are being tried in humans. However, few of these treatments have been tested in clinical trial.

    China is taking the leadership in bringing spinal cord injury therapies to clinical trial by establishing the China Spinal Cord Injury Network (China SCI Network). The Network will initially have six nodes: Beijing, Guangzhou, Hong Kong, Shangahi, Xi'an, and Zhengzhou. The spinal cord centers in these six nodes have the capability of randomizing thousands of patients to the most promising experimental therapies compared with the best standard therapies. The clinical trial will be rigorously designed and executed, compatiable with the highest international medical standards.

    Hong Kong University is proud to be the coordinating center for the China SCI Network. Dr. Kwok-Fai So from Hong Kong University and Dr. Wise Young from Rutgers University (USA) are co-directors of the Network. A distinguished board of advisors has been appointed to help with the fundraising. A board of investigators from each Network node will begin regular meetings to to standardize care and outcome measures, to consider possible therapies to test, and to plan clinical trials with Dr. Johann Karlberg who heads the Clinical Trial Centre at Hong Kong University.

    The initial funding for the China SCI Network will be raised in Hong Kong by a group of dedicated families, scientists, clinicians, and other people who are committed to finding a cure for spinal cord injury. In March and October 2005, the Network will sponsor fundraising events in Hong Kong to raise the money needed to run the China SCI Network. The Network plans to initiate its first randomized clinical trial by the end of 2005.

    The mission of the China SCI Network will accelerate development and availability of therapies that improve function in people with spinal cord injury all over the world. The China SCI Network will work closely with other spinal cord injury clinical trial networks that are being established in North America, Europe, South America, and in other Asian countries. The China SCI Network will work closely with the pharmaceutical and therapeutic industry partners to help convince them to invest in spinal cord injury therapy development.

    The China SCI Network is the first clinical trial network in Asia. As such, it may well serve as a template for clinical trials of therapies for other neurological conditions, such as head injury, stroke, Parkinson's disease, amyotrophic lateral sclerosis, multiple sclerosis, and many other conditions. By adhering to the highest international medical standards, including the U.S. FDA, the network will enable China to join the international clinical trial community testing the most promising therapies of therapies.

    For many families with spinal cord injury who have been told that there are no therapies that can restore function, hope is on the way. The China SCI Network is a partnership between the community of families with spinal cord injury, scientists and clinicians, and members of the pharmaceutical and biotechnology industry who are committed to fulfilling that hope for the millions of people who impatiently await therapies.

  7. #7
    Fabulous news, Max. Wise, thank you for elaborating. This is a great day, with many more to come.

    Regards,
    Sue

  8. #8
    Senior Member gettinup's Avatar
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    Thank God. I am extremely excited about the promise this seems to hold.
    Pink Bubbles...

  9. #9
    Here is a story in The Standard (a Hong Kong newspaper). http://www.thestandard.com.hk/stdn/s.../FI17Ag01.html

    The actual article has a picture of Patricia Morton and Christine Leung (a woman with C3 quadriplegia and diaphragm pacer who gave a wonderfully moving speech in Chinese). Patricia also talked about her hope as a mother of a person with spinal cord injury.

  10. #10
    Wise,
    A bit off topic, but did you see the article regarding Peter Morton, his wife, and daughter in the Sunday, September 5th edition of the Star Tribune (Minneapolis)? It was wonderful.

    Regards,
    Sue

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