Results 1 to 8 of 8

Thread: MNDA Priorities, 2013-16, the forum debate

  1. #1
    Forum Member
    Join Date
    Dec 2010
    Location
    Salford
    Posts
    1,234

    MNDA Priorities, 2013-16, the forum debate

    Hi,

    To start with, the MNDA's mission is to find a cure, NOT to fund and promote research. People with MND must be the sole benefactors of the MNDA.

    My priorities are:

    Identify pwMND who are in real difficulty and act swiftly to resolve. It is often bureacratic issues that cause the majority of problems. Establish MNDA hit-squad to tackle.

    Rigourous analysis of NP001, Brainstorm stem cell therapy and other significant treatments. Establishment of UK based phase 3 trials for all proven significant treatments.

    Gene tests offered to all pwMND.

  2. #2
    Forum Member
    Join Date
    Oct 2012
    Location
    Lisburn
    Posts
    83
    I am also keen for a cure to be found but I don't see how a cure can be found without research!
    The families of those plwmnd are often under more strain than the plwmnd and so also need help from the MNDA
    Smile they said "Life could be Worse", so I did and it was

  3. #3
    Forum Member john's Avatar
    Join Date
    Sep 2011
    Location
    Leyburn , North yorks.
    Posts
    2,236
    Hi Graham,
    I am a bit like Arthur unsure how a cure will just come along.unless someone is researching. I agree on the trial senario although the Neuralstem trials seem to have faltered a bit at the moment. Similarly NP001 is very quiet.
    The help with bureacracy I think would be invaluable and I would like to see national guidelines for the care and assistance of those with mnd drawn up for dealings with the DWP , NHS and local authority planning departments. This last one is particularly important. It should not be taking 8 weeks for planning departments to say yes or no to an application where the work is to be done to adapt a home to improve the quality of life for a disabled person. Each council should have an officer for fast tracking applications. There can't be that many for each council to deal with. Something else that needs to be addressed is wheelchair provision which shouldn't be down to a postcode lottery.

    john

  4. #4
    Forum Member
    Join Date
    Dec 2010
    Location
    Salford
    Posts
    1,234
    Hi Arthur, John, all

    A more detailed description of my view on research vs cure is this:-

    Should we find BrainStorm's NurOwn treatment be a significant treatment for all forms of MND as advertised, the choice is fund basic research in MND or fund phase 3 trials here in the UK. I view backing effective treatments as real-world research. An accurate model of how NurOwn works would to my mind be more valuable than another mouse study.

  5. #5
    Forum Member Laila's Avatar
    Join Date
    Feb 2013
    Location
    Aberdeenshire
    Posts
    439
    Ooh another questionnaire I do love filling these forms in.
    Last edited by Laila; 18th July 2013 at 00:07.

  6. #6
    Forum Member
    Join Date
    Dec 2010
    Location
    Salford
    Posts
    1,234
    MNDA priorities 2013-16 is incredibly important. It could be the difference of life or death for some of us. This subject needs debating.

    Andrew, please ask Dr Dickie to put his views on here. We need to debate options.

  7. #7
    Forum Member
    Join Date
    May 2012
    Posts
    598
    that's not a hint of sarcasm is it Laila? XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

  8. #8
    Forum Member Laila's Avatar
    Join Date
    Feb 2013
    Location
    Aberdeenshire
    Posts
    439
    Debbie, just having contortions dealing with endless questionnaires from insurance and pensions claims. Frustration. I am certainly filling in the online questionnaire though. Carol

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •