This May, I will be helping to raise funds in memory of Ruben, who was sadly taken from my colleague, Charlotte, last January.

Ruben was born with GACI (Generalized arterial calcification of infancy), which causes high blood pressure and a strain on the heart. This ultimately caused him to suffer with dilated cardiomyopathy (DCM), which is an enlarged heart that is unable to pump the blood round the body effectively. He fought so hard to stay, however fate was not on his side and he passed away on 12 January 2022.

Cardiomyopathy is a disease of the heart that affects around 1 in 250 people in the UK and is the leading cause for cardiac transplantation. Cardiomyopathy in children is much rarer, affecting about 1 in 100,000 infants, with dilated cardiomyopathy accounting for over half of those cases. It is a serious condition, with a high burden on the child and family, and sadly a high mortality rate.

I am therefore supporting Ruben’s Fund, which is raising money to set up a focused and dedicated project to research genetic diagnosis, which can help predict disease course, open avenues for personalised treatment, and have implications for family screening. As most paediatric cardiomyopathy remains genetically unexplained, there is an urgent need to better understand genetic susceptibility and underlying disease mechanisms.

Our aim is to help Charlotte and Patrick move towards their target of £200,000 and help other families avoid this devastating situation.

As a team, we are going to be walking 663,000km during the month of May (the distance from our office to Edinburgh!), to help Charlotte and Patrick hit the £100,000 milestone of their £200,000 target.

Any donation big or small is greatly appreciated.

Thank you
Rebecca Rebecca Knowles