DUCHENNE & BECKERS – Can we get these lads a chance?

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  • #75482
    DUCHENNE & BECKERS – Can we get these lads a chance?

    So much good news around lately – £Ms for Alzheimers research (mainly for older people) and £Ms for cancer research (all ages). At the other end – can we get a chance for those young lads with Duchenne and Beckers? The Translarna campaign has received good publicity and it is possible the Politicians might be listening. Research on Duchenne and Beckers is so exciting at the moment but Scientists are having to spend so much time fund raising when they could be finding the cure. These young boys are running out of time! What I would love to see is :-

    1. The Government funds research into holding back the progress NOW – such as using anti-cancer drugs – this would buy them time – then immediately fund the clinical trials

    2. The Government funds clinical trials for the promising Duchenne/Beckers cures/treatments NOW ..

    I know we would get the reply “money is tight” but there was a scramble to spend £Billion+ when we don’t even know exactly what this money is used for! Surely it would be possible to “borrow” the few £M’s needed for the research and cure from that money – after all the success would benefit all Duchenne and Becker lads throughout the world – and some of that success would greatly impact other health problems – again all over the world. So I’m not just thinking of one group – the knock-on effect could save other Researchers a huge amount of money and time. The NHS would be saved a lot of money. And we would know exactly where our money is being spent! Plus in election year I can think of others who might benefit!
    Does anyone else think this might be a good idea please? And how do you think we could achieve this?

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95226
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    Pledges are made by politicians but we rarely ever hear about any follow through.

    The recent coverage about the Translarna issue has only really brought a PM pledge to “look into it” – something of a hollow reply considering that there is a general election imminent and in many ways hands are tied to make changes when they can be quickly undone or are seen as pure vote fishing. But we have all heard that phrase before by all politicians before and we never hear about what happened when they have “looked into it”.

    Hopefully the lobbying by trailblazers and pressure by MDC and individuals reminding their MP’s, there may be changes in the future.

    It is a cold human fact that many of these things come down to the %, what % of the population are at rick of a condition, Alzeimhers, Cancer, Heart condition are a higher % than two specific types of a rare disease. I am sure the people at Mind and Scope, MS and MND have equal grievances with how government funded research is decided.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AMGmod AMGmod
    Moderator
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    Joined: 05/03/2015
    #95225
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    I don’t disagree with anything you’ve said in your reply especially relating to politicians. I’ve been around a long time, got to know a few MPs, some said the right things some didn’t, but as you said the bottom line is that no matter what promises they make they don’t have the power to carry it through. But that doesn’t mean we have to give up. It may only take an MP or other similar influential/wealthy person who has recently been touched by Duchenne/Beckers to take up the banner … we have to keep trying I think. Like water dripping away hopefully we can erode the obstacles.

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95227
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    I agree, we are still shouting loud. I have been involved with the MD campaign for more than 35 years in many guises. I am getting a little horse, lol. Research has made so many advances in that time, policy and ethos of organisations have dramatically changed and society is coming round to have us crips in their environ …. much has been achieved but there is always far more to do.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AMGmod AMGmod
    Moderator
    Posts: 4,751
    Joined: 05/03/2015
    #95228
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    We will never get another opportunity like today – MP.s will be fighting for their jobs, huge amounts of money will be floating around and up for grabs, people so fed up with the way of the world today may just wish to do some good – we just need to make sure the small amount that is needed comes this way. I’ve opened a Facebook page – Can we get these lads a chance – trying to get the message to the right person. I know it is a very long shot but a gamble worth taking I hope!

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95229
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    And here is the link – https://www.facebook.com/letsgethemachance

    My apologies for not including it yesterday.

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95230
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    It makes me so angry! A recent report says that “The Foreign aid budget has been increased so quickly they are struggling to spend it properly” A £60m police project reportedly made things worse according to locals! If we have to spend all this money we should “borrow” the small amount needed for the research and cure whilst plans and checks are being made on how the 30% increase should be spent. The results would benefit the lads all over the world, the “loan” could soon be repaid out of saving on the NHS, extensions, equipment etc. What can we do about it? Get in touch with Downing Street, your MP, Ministers, wealthy groups and people – we’re not talking about a huge amount of money in the scheme of things. Surely we can find a way or someone with the money to help!

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95231
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    Why are we waiting until December to cut off payments to India – they have just committed £B s to their Navy! It’s lovely to see we are spending £M300 in research on dementia – it is likely to hit any one of us – but surely we could spare around £M10 for the Duchenne/Becker research. I know the number of those affected is not high but they are important and the knock-on effect would greatly help research into the other types of muscular dystrophy – and would even spill over into other research … the advantage could be limitless!

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95232
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    I have just heard that Newcastle University produced a report in July last year saying the annual cost to the NHS each year for each patient is £71,000. Working on diagnosis at 3 by the time they are 20 the total cost will be £1,207,000 !!! Surely this figure alone is justification for investing in the trials … at the very least the research being carried out by Sheffield University which aims to use anti-cancer drugs to hold back the progress … that would be a tremendous saving all round and would give these lads a chance!

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95233
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    My local Councillor (and Candidate) has agreed to support this cause through his membership of the Health Overview & Scrutiny Committee! Excellent! What a great way to get the message through – from the bottom up! If more members of these Committees also recognised the need to hold back Duchenne/Becker and to find the cure so much money would be saved for the NHS. As we know the annual cost per patient has been worked out at £71,000 … these lads are definitely worth that! And the savings would help others too …

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95234
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    OK then – we’ve seen their targeted votes in the Budget – now we need to concentrate on the spontaneous give-aways to garner votes – they may sound pretty confident now but they will need to work hard over the next few weeks. What’s the bet money will start floating around to drag in the undecided? How about making sure some of it comes this way? In the scheme of things we are only asking for a small amount after all!

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
    #95235
    Re: DUCHENNE & BECKERS – Can we get these lads a chance?

    I am absolutely speechless! I’ve just read the article by Gethin Chamberlain (admittedly in the Mail on Sunday but he is an experienced freelance photojournalist). The title is “Bonfire of Britain’s Foreign Aid Billions”!. I urge you to read it! Then put pressure on wherever you can! With all this money floating around and being wasted surely some Politicians with courage should be pushing for the relatively small amount needed for research to find the cure – glad to see some are reported to have lodged their objections. It is scandalous!! And this small amount would save the NHS a huge amount of money too and give our lads a chance …
    if you google the title several links will come up …

    Lesley
    Participant
    Posts: 38
    Joined: 28/11/2010
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