This year I’m off back up north for the Great North Run.  Distance running is NOT MY THING so it’s going to be a sizeable challenge - but for a great cause.  Here’s why I’m doing it:

Ebens muscles are unable to produce Collagen IV protein and alongside his symptoms this led to him being diagnosed with Ullrich Congenital Muscular Dystrophy (UCMD). UCMD is a severe, life-limiting, progressive condition that leads to extreme muscle weakness. It affects the skeletal muscles which impacts areas like walking, if Eben gains the ability to walk he will lose this skill in early adolescence, he is also likely to face respiratory issues, muscle contractures and scoliosis later in life. Treatments and equipment are available to help manage these but sadly, there is currently no cure for UCMD. however there is hope in the form of promising research being done in this area. 80% of funds raised will go towards UCMD research and 20% will be kept in a welfare account for Eben's future needs.