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  • #74492
    How does the charity support you?

    Dear All

    I’d love to hear your thoughts about your first interaction with the charity: how did you hear about the charity, and what was your first point of contact? What role do you think the charity plays in supporting individuals and families immediately after diagnosis?

    Thanks, as always and in advance, for your helpful responses!
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #86109
    Re: How does the charity support you?

    How did I come into contact with the Charity?

    To be honest I am not exactly sure. It might have been via a family in the next village whose son had Duchenne, they may have told my parents of the local group. This would have been back in the dark ages of the very early 1970’s, it was not until the early 1980’s that I recall attending a cheese and wine evening, where a chap [very daper in suit and tie, well spoken, from MDC HQ] was in attendance, infact it was he who suggested that i had the FSH type [up until that point I only knew I had MD but was not the same at the boy from the next village].

    We began attending meetings of the local group who dealt with raising funds, nt enough of us to do support work as well. It progressed and by the time I was sixteen I was taking and preparing the minutes and preparing some letters and so forth for our tenacious chair person. I did my bit selling tickets for the duck race, or other raffles, rattling cllection tins [when you could rattle them], being the token MD person at awareness events .

    Sadly with increasing age an deceasing health of the handful of members [literally six of us round someones kitchen table] the branch was disbanded.

    How has the charity helped me?

    Well it helped me meet Sir David :lol: gosh at least a 26+ years ago when he attended an MD event in Norwich. It has kept me informed on research and information about the disease without compelling me to ‘join in’. In the past amost two years as par of the forum pack it has enables me to meet online buddies and get emotional support from them and give to them as well, as well as people to have a damn good old fashioed moan with and laugh with.

    [Ruth, i hope this doesn’t end up in the magazine as I think I am in the next one with my stand review. I’ll start to feel like a media w***e :oops: all this celebrity status will go straight to my head!! :lol: ]

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

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #86110
    Re: How does the charity support you?

    [Ruth, i hope this doesn’t end up in the magazine as I think I am in the next one with my stand review. I’ll start to feel like a media w***e all this celebrity status will go straight to my head!! ]

    Haha, AMG – that’s hilarious! Fortunately I’m not that predictable – close, but not exactly!I’m working on a brochure about how the charity supports people, and I wanted to write an authentic introduction. I would like to get a sense of a few people’s perspectives, and then weave those thoughts together into a general intro. Make sense? So, yes, you will continue to be a celebrity, but not always a named one! :-)

    Thanks for your comments – as always, they’re really helpful.

    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #86111
    Re: How does the charity support you?

    First proper contact was with an absolutely brilliant Care Advisor, who was put in touch with us by my hospital consultant. Such people are totally invaluable!

    petered
    Participant
    Posts: 564
    Joined: 24/01/2011
    #86112
    Re: How does the charity support you?

    Glad to hear that, petered – thanks for letting us know. Brilliant care advisors do such a great job!
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
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