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Thread: AGM and Annual Conference

  1. #1
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    AGM and Annual Conference

    Hi all,

    Our AGM and Annual Conference takes place this Saturday.

    For anyone unable to attend, the event is again being live streamed across the internet.

    To watch, tune in from 10am using this link: http://new.livestream.com/eventstreamingcompany/mnda

    For a full programme of the day, click here: http://www.mndassociation.org/Resour...ogramme-pr.PDF

    Additional information can be found here: http://www.mndassociation.org/news-a...ual+Conference

    If you have any questions during the conference please email mndsupport@mndassociation.org.

    The team will aim to answer your questions on the day or early next week.

    In the meantine, any questions about the day or the links above, please just ask.

    Best wishes,

    Andrew

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    Hi Andrew,

    Please could you ensure the question below is available to be put to the Chair at tomorrow's AGM during 'Any questions?'. Thank you.

    I am bedridden and unable to attend. Please send my apologies.


    12th September 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: conference@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.

    Since May 2011, forum members have been following the fortunes of BrainStorm Cell Therapeutic Inc.’s treatment for MND. This is the most advanced treatment for MND to date and is in phase 2 clinical trials at three sites in the USA and one site in Israel. The treatment is credible and is supported by leading neurologists at the Mayo Clinic in New York, Massachusetts General Hospital and Massachusetts University Hospital.

    Preliminary data strongly suggests the treatment is safe. Within 12 months it is expected that phase 2 trials will complete and the treatment will be deemed as safe. Under the Early Access to Medication Scheme that was introduced in April 2014, our community will be entitled to apply for this treatment.

    Should the MNDA actively support this treatment it would seem like our members could be receiving this treatment in 12 months time. The MNDA could also contribute research into this treatment by means of:
    State of the art imaging of the Central Nervous System, before and after treatment.
    Whole genome analysis of patients.
    Establishment of a UK trial site.
    Access to the $10,000,000 Ice Bucket Challenge donations.

    The question for the AGM is:
    ‘Should the MNDA offer active support to the BrainStorm Cell Therapeutics Inc.’s treatment?’

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


    Yours sincerely,

    MND Action Group
    Graham

  3. #3
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    Hi Graham,

    Thank you for your question. I have forwarded it on to our team at the Conference.

    For everyone else, I just wanted to bump this thread. Tune in from 10am using the link above and send any questions you may have to: mndsupport@mndassociation.org

    Best wishes,

    Andrew

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    Anyone been following the live feed from the AGM?

    . . . don't all shout at once!!

    FYI: I think Graham's question(s) above were addressed during the afternoon session. If anyone is interested in seeing the response by reviewing the recorded session, the reply was given at approx. 1hr 30mins through the session (at about 3pm 'real time').
    Last edited by MikeFD; 13th September 2014 at 16:14. Reason: Updates

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    Hi Mike,

    I'm not sure it was as Dr Brian Dickie didn't read the question out in full.

    We are patient and await the written response.

    It was noted that the press are enquiring what the IBC money is being spent on and if it was meeting the needs of MND sufferers or not.

    The science presentation on MND was fantastic. I have watched it twice already! And must watch it again.

    Please could you provide a link to it from Research & Trials.
    Last edited by Graham; 13th September 2014 at 21:52.

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    Hi all,

    A more detailed response to Graham's question has been posted on the Association’s Research Blog by Dr Brian Dickie.

    In brief, the Association is always keen to discuss potential therapy developments with industry. We have worked with companies in the past and certainly anticipate doing so more frequently in the future. Please note that we are not always in a position to talk about specific details of the research publicly, due to the need to maintain commercial confidentiality.

    Any discussion is invariably preceded by the signing of a Confidentiality Disclosure Agreement (CDA) and to disclose commercially sensitive information available would not only damage our relationship with the company, but it would also likely impact on the willingness of future companies to talk to us.

    That said, we hope that Brainstorm will be willing to share the information as widely as possible amongst interested parties. We do of course know of their research, as the pilot (phase I) study was presented at the Milan Symposium last year, organized by the MND Association. The results presented indicated that the approach was safe, but it was very preliminary with very small numbers, so clearly the phase II information will be extremely important, not just in terms of safety, but also in terms of efficacy. At phase II stage you really want to start seeing some hard evidence that the approach is working.

    Best wishes,

    Andrew

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    Hi Andrew,

    Please pass our thanks to Dr Brian Dickie for taking time out to respond to the question. His response is comprehensive.

    If possible, please could you paste the blog onto the BrainStorm thread for continuity.

    Grandmother said, 'A problem shared is a problem halved.'

    Best wishes

    Graham

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    Hi Graham,

    No problem - I will do that.

    Best wishes,

    Andrew

  9. #9
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    Hi All,

    I am very pleased to share with you the link to watch the MND Association's 2015 Annual Conference & AGM live.

    The event starts from 10am tomorrow (Sat 12th Sept). Simply visit http://bit.do/MNDAGM to watch and add your questions to the live discussion.

    We look forward to hearing from you.

    Jay

  10. #10
    Forum Member Jay_MND's Avatar
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    We're pleased to announce that our 2016 AGM and Annual Conference is taking place on Saturday 10 September 2016 at the Radisson Blu Hotel at East Midlands Airport.

    The conference is a great opportunity for people with MND, their carers and families to meet each other and to learn more about MND and the care and support available to them.

    We are pleased to announce that Professor Dame Pamela Shaw from the Sheffield Institute for Translational Neuroscience will be our guest research speaker in the afternoon session.

    There will also be a range of information and advice stands manned throughout the day by Association staff and external exhibitors and the ever popular complementary therapies will be available throughout the day as well.

    If you're living with MND, you, your family and carer can attend for free. Association member tickets are 15. You can register now - simply click here.

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