I first became aware of Huntington’s disease as my mam had the gene and bravely battled the illness for 20 years, until very sadly she passed away two years ago at the young age of 61.
I too was tested 11 years ago and I also have the faulty gene. I'm now 41 and my symptoms have recently started. My daughter Ellis s aged 19 and she also was tested last year and has the faulty gene.
I started doing the Great North Run seven years ago, and got in touch with the HDA to see how I could raise money for the charity. I have now done the Great North Run every year since. I have also been joined at various times by my wife Amanda, my dad Ebb, my daughter and numerous friends. We have also held a charity awareness day at my local pub to raise funds.
Throughout all this time, the HDA has been an amazing support! Always positive and happy, and enthusiastic – through the good days, and the tough emotional days. We were lucky enough to win the Most Inspiring Volunteer Award last year which was a huge surprise and a great honour. We were thrilled!
The main thing we try and do is be as positive as we can, and enjoy every day as much as possible.