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    speed clinical trials... spread the word.



    Aunt fights to raise awareness of Spinal Muscular Atrophy

    posted on October 27, 2008 in Spinal Muscular Atrophy Families and Friends, SMA Treatment Acceleration Act

    From the Delaware County Times in Pennsylvania:
    Elizabeth Vandiver never heard of Spinal Muscular Atrophy (SMA) until her sister’s baby, Gwendolyn, was born in October 2007.
    Gwendolyn seemed healthy at first. But her mother, Victoria Strong, had a gut feeling something was amiss because of floppiness in Gwendolyn’s legs and neck. Then, at about 9 weeks old, Gwendolyn came down with flu-like symptoms and “crashed,” Victoria said. It happened fast. In the morning, Gwendolyn was smiling. Six hours later, she lay paralyzed in her crib, struggling to breathe.
    Doctors initially diagnosed infant botulism. But in the tortuous and test-filled weeks that followed, they discovered Gwendolyn had SMA Type 1, the most severe — and terminal — form of a rare hereditary disease that destroys nerves in the spinal cord. These nerves control voluntary muscle movement, including swallowing and breathing.
    The article goes on to describe the family’s battle against SMA by drawing support of the SMA Treatment Acceleration Act through the online petition they created. The SMA Treatment Acceleration Act has been introduced in the House of Representatives and the Senate and is supported by Families of SMA, the SMA Foundation, Fight SMA, and the Muscular Dystrophy Association. The article also includes a discussion of the cause of SMA and the science behind the search for a cure, including comments by FightSMA’s science director, Dr. Chris Lorson.
    To read the full article, click here.
    Technorati Tags: dr. chris lorson, sma, SMA treatment acceleration act, spinal muscular atrophydr. chris lorson, sma, SMA treatment acceleration act, spinal muscular atrophy



    http://www.fightsma.org/index.php?congressional_info
    Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

  • #2
    this will speed human trials for sci! sma is the best bet for the first trials for stem cells.
    Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

    Comment


    • #3
      Ok man, what's the next step. What can you, I, and the rest of us do?

      Comment


      • #4
        Originally posted by jhope View Post

        speed clinical trials... spread the word.



        Aunt fights to raise awareness of Spinal Muscular Atrophy

        posted on October 27, 2008 in Spinal Muscular Atrophy Families and Friends, SMA Treatment Acceleration Act

        From the Delaware County Times in Pennsylvania:
        Elizabeth Vandiver never heard of Spinal Muscular Atrophy (SMA) until her sister’s baby, Gwendolyn, was born in October 2007.
        Gwendolyn seemed healthy at first. But her mother, Victoria Strong, had a gut feeling something was amiss because of floppiness in Gwendolyn’s legs and neck. Then, at about 9 weeks old, Gwendolyn came down with flu-like symptoms and “crashed,” Victoria said. It happened fast. In the morning, Gwendolyn was smiling. Six hours later, she lay paralyzed in her crib, struggling to breathe.
        Doctors initially diagnosed infant botulism. But in the tortuous and test-filled weeks that followed, they discovered Gwendolyn had SMA Type 1, the most severe — and terminal — form of a rare hereditary disease that destroys nerves in the spinal cord. These nerves control voluntary muscle movement, including swallowing and breathing.
        The article goes on to describe the family’s battle against SMA by drawing support of the SMA Treatment Acceleration Act through the online petition they created. The SMA Treatment Acceleration Act has been introduced in the House of Representatives and the Senate and is supported by Families of SMA, the SMA Foundation, Fight SMA, and the Muscular Dystrophy Association. The article also includes a discussion of the cause of SMA and the science behind the search for a cure, including comments by FightSMA’s science director, Dr. Chris Lorson.
        To read the full article, click here.
        Technorati Tags: dr. chris lorson, sma, SMA treatment acceleration act, spinal muscular atrophydr. chris lorson, sma, SMA treatment acceleration act, spinal muscular atrophy



        http://www.fightsma.org/index.php?congressional_info
        This is not dissimilar to the Christopher & Dana Reeve Paralysis Act bill.

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