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    Hello MND Connect.

    Maybe I’m being over sensitive but I don’t agree with being bombarded by email and letters from MNDA appealing for donations for research.

    Over the years living with MND my family, friends, former colleagues and me have raised 10’s of thousands of pounds for the charity. I am a member of a research advisory group and I actively campaign for improvements in support for people like myself living with the disease.

    I fully support the association campaigning for funds but surely they have the technology to screen out those of us who have MND. Whilst I am listed as a volunteer, and that will never change whilst I am able, I hope you can see my point.

    I’m going to do this even if it kills me!

    Hi Barry,

    I think that I posted the same thing around five years ago and they stopped emailing and those letters to me about it.

    I am also a volunteer but not so active as you.

    I love the TV adverts.
    It's only three pounds a month but when you ring up they give you a hard luck story and push for twelve.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      Hello Barry52,

      Thank you very much for taking the time to post and apologies for the delay in responding to your post. We are very sorry that our mailings have caused you upset - as you can imagine, this is never our intention, so I would like to start by saying sorry.

      There is an ongoing debate about whether or not to include people living with MND in our fundraising appeals, however, some people with MND tell us they do wish to receive these communications, and some say they prefer not to. As such, this is a question we now ask when we are first in contact with people with MND, to try and ensure that we do not send communications that aren't wanted. So, whilst we do write to people living with MND and their families and ask for support to help fund MND Association services, we are more than happy to exclude anyone who doesn't wish to receive this type of letter, at any time. This is, of course, a personal choice, and we appreciate that individuals can change their preference at any time. Therefore, we are always happy to update our records to ensure we are communicating with people in a way that they are comfortable and happy with.

      If you would prefer to no longer receive fundraising appeals , please do not hesitate to let our Fundraising team know, by dropping them a note with your full contact details to [email protected], and they will then update your record accordingly. Alternatively, you can call them directly on 01604611860.

      Once again, thank you for taking the time to get in touch , and please accept my apologies for any upset caused.

      Kindest regards,
      MND Connect
      Contact us on 0808 802 6262 or at [email protected]


        Thanks for your reply Prachi. I will email the fundraising team as I am unable to communicate properly by telephone.

        I’m going to do this even if it kills me!