Looking for a charity address/link for LEMS

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Hi,  My Dad was diagnosed with LEMS fairly recently after a diagnosis of small cell lung cancer in January 2014.

He passed away this week and the family would very much like donations to be made into the research of this condition.

He was taking part in research himself in Birmingham and we know that this is what he would like.

I have found specific charity details for lung cancer but nothing yet for LEMS in the UK.

Is anyone able to help me or is it that there is no charity set up yet in the UK.

Our thanks in advance

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6 Replies

  • Posted

    Hi Dave !

    Sorry for your loss

    I also have lems I am 24 years old and I have been looking for charity's and support groups with other people with this condition ! But as your probably aware of its a very rare condition ! Hope u find something and I will keep looking aswell


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    • Posted

      Hello Jaz,

      Thank you for your kind words.

      In case you can't see other posts that I received on this thread, a kind soul sent this on.

      I think it's exactly what you may be looking for - it offers many things to support.

      This is the charity that Dad's donations will be going to and will will now fundraise for through my half marathons and other activities.

      Wishing you well - maybe we'll meet one day in our joint cause?


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  • Posted

    Hello Dave, I'm sorry to read your news.  I have done a little research into LEMS [just now] & found a link with all sorts of information which may be of use to you


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    • Posted

      Thank you so much for your kind words and also for taking the time to research this further at what is such a busy time for us.

      It is exactly what we were looking for and I have been able to include the details so that his family and friends are able to donate.  As a registered Nurse for his working life I know that this is exactly what he would have wanted; to be able to help others and to allow research to speed up.

      Thank you so much once again.

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