FIXSCA6

I have been reading these posts for years and found them very informative but this is the first time I have written.  I have SCA6, inherited from my father, and am now at the stage that I am nearly always tired.  I can still walk with a stick and my blue badge is invaluable.  As is my husband!!! I have 3 daughters in their 50's who, as yet, have no symptoms and have not been tested. 

My daughter, Sarah, has set up a fund raising account.  FIXSCA6 which is linked with Ataxia UK and the proceeds will go to research in SCA6 and other forms of ataxia. She is wondering if anyone would like to donate or if they know of anyone doing a sponsored activity who would like to make FIXSCA6 the subject of their sponsorship.

It is Ataxia UK which will administer any moneys.

The answer to our problems is, most likely, to be found through research and, although it may not help us,  it is hereditory and it would be lovely to help someone 'down the line'.

5 Replies

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  • You so go girl!  LOVE your attitude 😊😊

  • Hi jeanm I too have 3 offspring, 2 daughters & 1 son, who seem OK but havenot been tested, 2 of them have their own children. I have SCA number unknown. I am in a research programme called 'Genome England' who I gave consent to using my DNA. They research not only Ataxia  but other neurological issues. I won't benefit but someone will so that makes me happy. 

    Keep well

    Berejena

  • Hi Berejena my name is Julie I have SCA number not known but my mum had the same symptoms but I have started having them from a younger age . I was wondering how you got into the research programme ? I also have a daughter who I am worried about as she has dizzy turns and scolios of the spine ( I know I spelt it wrong lol ) but only a little bit no op needed . Its just she sees me and I do my best to go to the gym 3 times a week trying to build stronger leg and core muscles to hold me up , as I am finding myself weaker and weaker . I have bad eyesight anyway but it keeps fading , going blurred and shaking even when i'm not ! As you said its for the people that come after us eg : my daughter , daughters children . I hope this message finds you in good spirts from Julie ( maber )

  • Hi Julie (maber) I just went along to Ataxia clinic in Newcastle & they jusst asked me, I said yes.  Maybe you'll need to ask at an ataxian clinic.  Just thought, do you get the quarterly magazine Ataxia? Because I'm sure they were asking for volunteers. If not I can copy I think & send it to you.

  • Hi Berejena  Thank you for answering my question . I will have a look in the mag when it comes ,  I have the mag in big print which helps . I live in Scotland and I don't think we have a clinic , they already know that mine is heredity ( don't think I spelt it right ) although not which one it is . I hope this message finds you in good spirits .

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