‘I am rare and there is value in all rarity; therefore I am valuable.’ Og Mandino

I have McArdle Disease, an ultra-rare Glycogen Storage Disease, Type V. Please check out www.agsd.org.uk

In the world of music, I am often on show publicly, and I am judged by my last performance. Sadly, I have also been judged even without a performance, and I have also been judged by misguided or factually incorrect information. I continue to stress the importance of not stigmatising those with disabilities. McArdles might be invisible, but I refuse to be invisible.

AND I don't ONLY play the harp!! We have just had our annual Walk in Wales course in some beautiful places in Pembrokeshire. To see such beauty, to experience the friendships, the laughter, the serious chats about how to live with a rare condition... it's all uplifting! Apart from the walk, we have lectures and discussions about living with McArdles, and we share leaflets containing different kinds of information about our rare disease, which we can bring home and hand out to relevant people/places.(All meticulously prepared by the McArdle's warrior Andrew Wakelin). Considering how few we are in the world with this ultra rare disease, we came from Wales, England, Holland, Germany, France, Iran and the USA and revelled in the entire week.

Without funding, these weeks cannot continue. The accommodation is expensive to hire, we have to buy food, and we have to make sure we have certain experts and emergency services available to us.

If you could help even with one pound... that would help and I would be most grateful!

Here's to the next walk (IN SNOWDONIA!!) in 2027