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Thread: Email the BBC--demand coverage of a real cure

  1. #11

  2. #12

  3. #13
    Heres a news link to the World Cup Exoskeleton Project:
    http://www.thedenverchannel.com/news...ies-walk-again

    Not the way I want to walk again, but you gotta admit, it is kind of neat and interesting. I can see this being used primarily for specialized heavy lifting or other uses more, than for an SCI population.

    i just hope the public perception doesn't see this as a cure for us!

    P.S. I emailed the BBC!

  4. #14
    Quote Originally Posted by Adrian View Post
    Horizon is a generally well respected science documentary programme. It is well worth asking the BBC to undo some of the potential damage to cure research that an over-emphasis on exoskeletons could do by urging tem to make a Horizon documentary on SCI cure research. Horizon documentaries are usually seen as tackling scientific issues without being patronising or resorting to over-simplifications. A campaign to produce a programme on cure research to redress the balance could turn a negative into an opportunity for a genuine positive.
    What reaction do you think we can hope for?

    I don't expect much, but if they'll make a documentary on SCI cure research I hope you'll be in it.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  5. #15
    Senior Member KIM's Avatar
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    This might be a reason why. http://www.youtube.com/watch?v=WtODibC_82A

  6. #16
    Quote Originally Posted by KIM View Post
    This might be a reason why. http://www.youtube.com/watch?v=WtODibC_82A
    I wonder if prof. Miguel Nicolelis understand the difference between walking and having your legs "walked" by robotic legs..

    Paolo
    Last edited by paolocipolla; 06-09-2014 at 08:10 AM.
    In God we trust; all others bring data. - Edwards Deming

  7. #17
    I got this answer from BBC:

    "Thank you for your email to the BBC Trust. The Trust has no role in day to day operational or editorial decisions, such as content of television programmes. Although the Trust sets the overall strategy for the BBC, responsibility for the BBC’s editorial decisions rests with the Director-General as Editor-in-Chief.

    The Trust does have a role in the complaints process, but only at the final stage, hearing complaints on appeal. The management must first have had an opportunity to respond. You can find details of the complaints process at www.bbc.co.uk/complaints.


    Therefore if you do have a complaint or comment to make about BBC content in general the best way to get in touch is by using either the online form at www.bbc.co.uk/complaints, writing to BBC Complaints, PO Box 1922, Darlington, DL3 0UR or by phoning 03700 100 222. If you require any reasonable adjustments to be made in order to allow you to submit your feedback, please contact the Audience Services team via any of the above means."

    Hmm.. what to do next?

    Paolo


    In God we trust; all others bring data. - Edwards Deming

  8. #18
    Senior Member PC720's Avatar
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    I got the email requesting my participation.

    Done done done

  9. #19
    Quote Originally Posted by PC720 View Post
    I got the email requesting my participation.

    Done done done

    Your partecipation to?? Can you expand on that?

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  10. #20
    Senior Member PC720's Avatar
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    Quote Originally Posted by paolocipolla View Post
    Your partecipation to?? Can you expand on that?

    Paolo

    04 June 2014

    Email the BBC -- demand coverage of a real cure!


    Go here to send your email immediately.

    You may have heard of the Longitude Prize – a UK-based scientific committee offering a ?10m prize for the solution of one of humanities greatest challenges. Six challenges have been shortlisted, one of which is paralysis.

    A BBC documentary series called Horizon aired on 22 May to introduce the six challenges. Much to our dismay, the segment on paralysis focussed primarily on compensatory devices such as wearable robotic suit with almost no mention of regenerative medicine or cell-based therapies. Prize organisers have highlighted that complications due to paralysis reach further than just mobility and yet the ‘solution’ to paralysis proposed by Horizon focussed solely on robotic walking.

    Robotics are very popular at the moment and the media appear fixated with images of people ‘standing’ and ‘walking’. However, for a majority of those living with paralysis, compensatory devices offer little in the way of dealing with the real problems of paralysis. These wearable devices do not offer any recovery of function resulting in a continuous struggle with bladder, bowel and sexual dysfunction, neuropathic pain, poor circulation and a whole host of other paralysis-related health issues. To some in the paralysed community it feels as though funding of compensatory devices is money spent on keeping people paralysed. It’s also worth mentioning that wearable robotic suits do nothing to mitigate the huge financial burden that paralysed people place on governments.

    We know that many in the community desire the return of different functions and not just walking. Regeneration of the spinal cord has the potential to improve many different functions while wearable suits will only ever deal with robotic walking. It is disheartening to see the media so fixated with these devices when they offer so little to paralysed people. Why is so little airtime being given to regenerative medicine? Regenerative medicine actually has the potential to radically transform people’s lives by addressing priorities as identified by the community themselves.

    Thankfully, regenerative medicine IS focussing on paralysis and all the associated problems, but how come there was no mention of this approach on the show? There are numerous clinical trials which are testing emerging therapies involving cells, genes and enzymes and yet none of these were discussed or even mentioned by the BBC. These therapies don’t seek to compensate, they seek to cure and it’s time that there was fair representation of this approach in the media.

    Join us in asking the BBC to fairly represent the current state of regenerative medicine by using a simple online form.

    We're hoping that with enough emails going to Ms. Diane Doyle, Acting Chair of the BBC Trust (the BBC Trust is the guardian of the public interest at the BBC), some airtime will be dedicated to the many varied and exciting avenues which are currently being pursued in regenerative medicine, with regards to paralysis. Time has been given to compensatory devices and robotics and we'd now like our fair share of media coverage to redress this balance.

    Compensatory devices = no return of function
    Regenerative medicine = return of all function

    Which do you want the media to be discussing?


    Go here to send an email to the BBC and ask them to be honest about regenerative medicine for paralysis cure.

    [B][URL="http://www.emailmeform.com/builder/form/5f0WbXwEsD6rZ5cbVhd0ze"
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    Last edited by PC720; 06-11-2014 at 12:15 PM.

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