Like most children I adored my grandparents. My Granddad Morton was a grafter and had the hands to prove it, he taught me to walk the moors, grow strawberries and enjoy the simple things in life. My Grandma was an altogether more complex human being. Her mood was turbulent at best and she had what I only knew to be a 'strange walk'. As we walked the streets of Bradford  her arms and legs seemed randomly disconnected from her mind. I am ashamed to say that as an all too self aware teenager I would often walk several paces behind her.  Grandma died a tragic death, so profoundly loosing control of her limbs that she fell in a bath of boiling water. Several years later my uncle Geoff (and childhood hero) was discharged from three decades of service to West Yorkshire Police Force on Mental Health grounds. He later suffered the indignity of being arrested by his colleagues and later sectioned. While in secure care a nurse observed Geoff's presentation and asked me if he'd ever been tested for Huntington's  disease. He hadn't and together we agreed this would be a worthy investigation. The investigation concluded that my uncle had the repeat genome sequence that is Huntington's disease.  Geoff slowly lost normal function of his limbs, contracted pneumonia and later died a desperately lonely death. 

Huntington's is a rare and cruel disease for which there is no cure. Right now there are families struggling with this disease. When that struggle includes the repeat genome being passed from mother to child (and particularly son) the aggression of the disease doubles. This means that across the globe there are teenagers living courageously with juvenile Huntington's disease while their own parents are critically unwell. 

Understanding Huntington's is not easy it does not attract headlines and is not high on the public health agenda. While some drug therapies help address some of the presentation of Huntington's there is still no cure. We need research, care and support for all of those suffering from this cruel disease. That's why, in a moment of madness I've agreed to ride All Points North, I do so in memory of Uncle Geoff and Grandma Edna, I do so in gratitude for those who care for my mum, I do so hoping that in some small way we can bring a little bit of light in a too often too dark world. 

All Points North is an unsupported ride of 1000km connecting 10 control points across the north of England in under four days. It is by far the biggest cycling challenge I have ever taken on. It is probably an act of complete madness. 

Ill use my Facebook page for training updates and further reflections on a life with Huntington's. 

HDA do some amazing work. Help end the suffering that is Huntington's.