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Thread: Couple donates brain of daughter who died of PML/MS complications to NIH

  1. #1
    Distinguished Community Member agate's Avatar
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    Default Couple donates brain of daughter who died of PML/MS complications to NIH

    This story, which was aired on WLUC, a TV station in upper Michigan, might illustrate the importance of donating an MS brain to science. This couple, whose daughter died of PML or complications due to MS, donated her brain to the NIH and were sent a letter of appreciation. The story headline is misleading as the brain hasn't led to any medical breakthrough that I know of, or at least it isn't reported in the story, but it might lead to a medical breakthrough.

    http://www.uppermichiganssource.com/...391097871.html

    In the past people have expressed curiosity about the people who got PML while taking Tysabri. There's hardly any information available but this is one of the rare instances--a sad story though.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member Frog42's Avatar
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    Impressive. How very hard for them and what a great way to honor their daughter.


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Distinguished Community Member agate's Avatar
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    The mom seems to be writing a book, quite possibly about Tysabri (judging from the title). I don't think anyone would blame her for being angry.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member SalpalSally's Avatar
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    How sad and how great of Mom.
    Love, Sally


    "The best way out is always through". Robert Frost







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    Distinguished Community Member Lazarus's Avatar
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    Agate,
    What makes you think the mom is angry?
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member Frog42's Avatar
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    It seemed to me she thought Tysabri is what killed her daughter. I think that could be where the "angry" aspect comes in.


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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  13. #7
    Distinguished Community Member agate's Avatar
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    That's what I got from the article too, Vicky. The title of the book the mom is writing: The Legal Lethal Drug--about her daughter's experience sounds as if she regards Tysabri as far more dangerous than many people do, because of the risk of PML.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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