By Iyamide Thomas on behalf of The Sickle Cell Society
The Sickle Cell Society was saddened to hear of the passing of Dr Neville Clare M.A. PhD on 20 July 2015. Dr Clare who was 69 was a pioneer in raising awareness of sickle cell disease in the UK and advocating on behalf of those with the condition. He himself had sickle cell and was passionate about the sickle cell cause. In 1976 Dr Clare launched one of the first ever sickle cell organisations in Britain to promote sickle cell research and awareness. It was called the Organisation for Sickle Cell Anaemia Research (OSCAR) and from its early beginnings in Wood Green several OSCAR branches subsequently emerged both in London and nationwide. On hearing the news of his death Comfort Ndive of the Sickle Cell Society said:
“His immense contribution to the world of sickle cell has been a great inspiration to many of us. He would be sadly missed. He supported the Society’s Hackney Sickle Link Project in Hackney when we had an Open Day in Hackney Town Hall in 2001. He was always willing to share his experiences and knowledge of what sickle cell is and how it affects people living with the condition”.
In 2007 Dr Clare published his book aptly named ‘An Oscar for my troubles – A Life Working for Better Understanding and Treatment of Sickle Cell Disorder’. In this very interesting book Dr Clare reveals that he wanted the name of his organisation to be one that would easily be remembered and the first name that came to mind was SCARE – the Sickle Cell Anaemia Research Establishment. He talked about the idea to colleagues whose feedback straight away was “Maybe not Neville”! (He goes on to say there was actually an organisation in America with that same acronym). In the Foreword to Dr Clare’s book Tony Wade MBE said of Dr Clare:
“On discovering the lack of understanding there was in Britain of this health issue that affected the Black community, Neville Clare took it upon himself to research what information there was available, mainly from the USA and set about initiating a programme of raising awareness to make the problem publicly known in Britain and ensuring that it got on the public debating agenda. He drew on his own suffering and personal experience to open people’s eyes to what was at stake”.
May his soul rest in peace