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Thread: Fight For Your Right For Treatment

  1. #1
    Forum Member
    Join Date
    Dec 2010
    Location
    Salford
    Posts
    1,159

    Fight For Your Right For Treatment

    7th October 2014

    Mr Alun Owen
    Chair of the Board of Trustees,
    Motor Neurone Disease Association,
    David Niven House,
    10-15, Notre Dame Mews,
    Northampton.
    NN1 2PR

    Cc: BrainStorm Cell Therapeutics Inc.

    Email: research@mndassociation.org

    Dear Sir,

    I am enquiring on behalf of myself and other MND/ALS sufferers who frequent the MNDA website forum in the U.K. This open letter to the MNDA is posted on our MNDA forum.

    Further to my letter to you 12th September 2014, I refer you to the statement released yesterday by BrainStorm Cell Therapeutics Inc. in which professor Karussis states:

    “I have now treated over 30 ALS patients with NurOwn™ in two clinical trials, as well as in several compassionate use treatments, and I am enthusiastic about its emerging safety and efficacy profile.”

    The efficacy profile is now being established and answers Dr Brian Dickie’s point that efficacy and safety need to be demonstrated prior to Early Access to this treatment being granted for UK patients.

    While our forum friends consider when to commit suicide in the face of this awful disease, I implore you to show determination to offer our friends this treatment option as opposed to a one-way ticket to Switzerland.

    Access to our $11,000,000 Ice Bucket Challenge donations should be considered in this matter.

    The response will be posted on our forum for our members to discuss.


    Yours sincerely,

    MND Action Group
    Graham

  2. #2
    Trevorhb
    Guest
    Well said.

  3. #3
    TJ_ASG
    Guest
    Well said.

  4. #4
    pete
    Guest
    Hi Graham,
    Exactly what I had expected from yourself, let us all hope it gets a favourable response from both parties involved and we all get a glimpse at that elusive light at the end of what has been a very long tunnel.

    Pete

  5. #5
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,537
    Hi Graham;

    So true.

    Terry

  6. #6
    Night walker
    Guest
    Thank You Graham XxX

  7. #7
    marieline
    Guest
    Graham, the fierce and mighty Scot Keep banging on those doors mate.
    xx Marieline

  8. #8
    BlueEyesOhio
    Guest
    Well done, you!!! Our advocate!!!

    Lynne

  9. #9
    Forum Member Jan's Avatar
    Join Date
    Jun 2014
    Location
    Ashford Kent
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    427
    Fantastic, well done Graham x

  10. #10
    Forum Member Lycanthrope's Avatar
    Join Date
    May 2014
    Location
    Kent
    Posts
    321
    thanks Graham. hope we hear something back soon. Becky x

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