Fundraising

Hello everyone, how exciting about trehalose. It would be great if we all had some hope for our future - the sooner the better!

In the meantime I think we should all be fundraising if we can for Ataxia UK - it has been great to have it there for the helpline, information and now this forum where we can all share ideas and what works for us but mostly to realise we are not alone.

Although I have cerebellar ataxia diagnosed nearly 6 years ago (I am 56 this year), it is progressing slowly at the moment, so I am very hopeful of treatment or hopefully a cure in my lifetime but we cannot expect research etc to be carried out relying always on other people to fundraise, so we all need to do what we can - 'every little helps' as that famous supermarket says!

I am doing the Velocity zip wire in June so will be on the scrounge for donations soon - watch this space. I have a huge fear of both heights and speed (it goes 100mpH) but it is not as scary as our future threatens to be without any treatment available yet.

With hope

Amanda

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  • You are so right. Husband did Brighton marathon last year for Ataxia but didn't mention it on here. The first thing my dad did was set up a monthly payment to Ataxia when we found out!

    Good luck with your zip wire....not something you'd catch me doing! I'm sure you'll get some sponsors here!

  • Your post is interesting and your endeavour admirable.

    But aren't you an administrator here at ataxia UK?

    With respect, Joe has already given us hope with his research to do with trelahose and some of us are now taking it on the basis of his excellent research. There is already hope there and I am not waiting for an expensive drug company to give it its seal of approval. All the latest research has done is vindicate Joe, in my mind.

    If you can still throw yourself down a zip wire and not be compromised by your illness, then good luck to you.

    Most of us here can barely walk in a straight line unaided, have a plethora of daily symptoms, cannot work and have had to suffer Pip assessments...

    To get awards that barely keep us above the poverty line and certainly don't pay enough to get any help. Therefore, not many of us have spare cash for charities.

    Charity does, after all begin at home. If I ever won the lottery the last thing I would do would be to give any money to a charity, I would rather give it directly to the sufferers, to alleviate or improve slightly their quality of life.

    I am glad for you that your quality of life allows you to do and plan these things still - it sounds like amazing fun, but I would prefer to save what little I have for myself and my children.

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