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Viewing 15 posts - 1 through 15 (of 15 total)
  • #85431
    Re: London 10k run and justgiving.com

    Hi there,

    I write copy for the charity website. If you were to email me some information about your fundraising event I could put together a story for the website or our blog with a link to your fundraising page.

    Do you have a twitter address as I will tweet your fundraising page.

    Email me at d.melbye@muscular-dystrophy.org with some background and I will email back some questions and I can see if I can put somethign together.

    Dan

    Thanks for fundraising for us – it means a great deal. :D

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #84449
    Re: Talk MD you tube channel

    There is a YouTube channel for the Muscular Dystrophy Campaign.

    If anyone wanted to get involved in doing video – either sharing a story or an experience or had ideas for something else you could send it to me and I can have a look and see how it fits with the categories etc. We are starting to get more and more video from the Trailblazers for example.

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #84227
    Re: Eight years of campaiging

    New muscular dystrophy advisers:

    http://www.scoop.it/t/the-fight

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #84222
    Re: When Tanvi met Tanni….

    You can see more of the videos on you tube too.

    http://www.youtube.com/playlist?list=PLF964E711529E7D69

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82102
    Re: Information about conditions

    @ambitiousturtle24 wrote:

    I’m glad the MD Types pages are being revisited! Every 6 months or so I have a “check” on the Minicore (multicore) Myopathy page to see if there’s any “new” developements. I was so excited when it was updated for the first time with it’s current information in 2004. But hasn’t had any new information on this particular type since :( So I’m left to browse Google again for any further developements which are particularly hard to come by for the rarer kinds of MD. I’ve been working on the first organisation specifically for Minicore Myopathy with another person with the same diagnosis so getting as much information as possible is extremely important. Update ones! How often would you say the types pages are revisited anyway? Are they updated regularly with the latest known facts/info on the conditions? Adding a link to research to the specific types is a great way to go :D … also maybe link to certain TalkMD threads that have i.e beckers mentioned so people find it easier to get intouch.

    For example:
    A newly diagnosed person with Beckers finds the MDC website, gets right on the Beckers section. Reads all about it and bam at the bottom/side wherever links to direct discussions from other people going through the exactly same thing just one click away!!

    Also I thought of written material. Say a link on each types page to directly order the leaflet on that type to read later/read with the family/where theres not normally access to a computer. Having links on these specific pages instead of trailing around the whole MD website to find it may be more practical.

    Good ideas.

    I think in the past the condition pages were thought of as a place to provide an overview of the key information, while the research news would provide latest developments. However in reviewing these pages I am looking at making them into a hub where as much information – including latest research and clinical trials – are collected so that peopel can return and find updates as and when they want.

    I had considered making the fact sheets available within the specific condition pages. I will also look into the possibility of linking to specific forum threads. Alternatively I might introduce the forum within these pages with a quote from someone in the forum and link through making it clear that the forum is place where people can ask questions and seek advice.

    If you have any other thoughts about other content which would be useful here then let me know as these are all good points. :D

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82100
    Re: Information about conditions

    Excellent points. Yes signposting to the regional care advisors from this section would be useful.

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82096
    Re: Information about conditions

    Thanks,

    :idea: If anyone else has links for other blogs forums they go on which they think are good – please add these here.

    Generally let me know if you have any ideas about other content or information that you would like to be accessible from the condition pages. It can be content curruntly on the website or information, or links and content which we don’t have which you would like to see.

    D

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #82093
    Re: Information about conditions

    @taungfox wrote:

    Excellent idea.

    As we usually start newcomers off by directing them to the
    types of MD pages it would be good if this led to other
    things. Maybe links to other external websites as well.

    What links would you like to see here? Would it be to other forums or blogs maybe, what websites do you think should be accessible from here?

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #80929
    Re: EasyJet’s ‘discriminatory’ wheelchair policy

    The article is a lot better, as the journalist says “easyJet is, by its own admission, an airline incapable of lifting a wheelchair a few feet off the ground. I’m not sure I’d trust it to carry hundreds of people thousands of miles over the ocean.”

    But again some of the comments posted are rediculous, narrow and ill informed.

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #80926
    Re: EasyJet’s ‘discriminatory’ wheelchair policy

    There were posters who were genuinely confused about the issues, but some of the comments from posters were really shocking and ignorant.

    Thanks to everyone from the forum who posted replies.

    Some more about the case has been written in the Campaigns Blog about this issue as it seemed important to clarify some of the things that were being said and respond to inaccuracies or misunderstandings:

    http://campaignsmd.wordpress.com/2011/06/28/declan-and-alis-battle-with-easyjet/

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #80286
    Re: End this senseless waste

    Rochdale campaigner travelled to Westminster to meet with Care Minister Paul Burstow and demand better support and healthcare for the 8,000 families in the region living with devastating muscle-wasting diseases.

    http://www.muscular-dystrophy.org/get_involved/campaigns/campaign_news/3762_end_this_senseless_waste

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #77745
    Re: What are you reading?

    @catatude wrote:

    an anyone recommend any good sci fi that they’ve read lately or any good books to add to my reading list

    My personal favorite SciFi writer is Phillip K Dick. Mind bending reality stuff. Pretty much anything he has done is good.

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #79807
    Re: Podcasts discussing therapies for different MDs

    Yes thanks for posting this link. I will have a listen to some of these later.

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #79776
    Re: #MDCsocial today (23 March) about 2.15

    Thanks for the postings. We made it out alive. :D

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
    #79790
    Re: No Cuts Necessary…..

    Most likely they are cutting as much as possible at the beginning while they can justify it by blaming it on the economic disarster created by the banking industry. Get all the bad news out of the way. Then with the money they have accrued they can make a massive tax cut just before the next elections. Welcome re-election.

    InotI
    Participant
    Posts: 46
    Joined: 15/03/2011
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