A 70th birthday may be a catalyst for some slowing down, taking things easier, but I’m not complying 🤣. 

 I have a really active life though it’s not quite as straightforward as it seems. When I turned 70, I decided that this was THE year I should take the time to stand up and comment further about the realities of life with a disability like Mcardle disease. More and more people, even close friends and work colleagues, have asked me how does this condition really affect me, alongside having sight only in one eye, and wearing two hearing aids, as a practising musician. Well, here I am, still active, still working, and still smiling!  

 Please spare a few minutes to look into the website of the UK charity to which McArdle disease is affiliated. It is www.agsd.uk The Association of Glycogen Storage Disorders (UK) and there is all the information you’ll ever need about our rare disease in that fine website. There is also a video on my Facebook page, if you wish to find out about my own story.

The AGSD (UK) community make up the family I have grown to rely on to give me confidence and guidance; it has enabled me to make great friendships with other McArdleites (as we call ourselves) because having a rare disability can be lonely and isolating. BUT we have such a lot to do, and although understanding and empathy is much needed at all times, we have to find a great deal of funding for everything to progress. Every penny counts, and pennies these days are almost as rare as our disability! I am really grateful for all donations. Thankyou.