Today officially marks our 40th anniversary, as the Hodgkin’s Disease Association (as we were known back then) was registered with the Charity Commission on 12 June 1986. Here, Anna, whose parents were instrumental in starting our charity, shares why Lymphoma Action is still close to her heart.
‘My father, Tim, was diagnosed with non-Hodgkin lymphoma (NHL) in 1972 at the age of 42. Under the care of Dr Tony Jelliffe at Mount Vernon Hospital, he was treated for six years with chemotherapy and radiotherapy and carried on taking chlorambucil for a further four years.
Dad was frustrated that there was so little information about NHL, or support available to help patients cope with the disease. However, he had such a positive attitude to his illness that the ward sister often asked him to talk with other patients. Dr Jelliffe heard about this and put dad in touch with two of his other patients, Lewis Cash and Richard Franklin. They both had Hodgkin lymphoma, and a similar desire to make a change; together they formed a small support group.
At the time dad was working in London and it wasn’t until he retired in 1985 that he had time to devote himself to taking forward the ideas that he, Lewis and Richard had. In 1986 the Hodgkin’s Disease Association (HDA) was born. There was a steering group of five people - Lewis and Jackie Cash, a young Hodgkin lymphoma patient called George Ball, my dad and my mum, Felicity. They found a treasurer and dad’s consultant Dr Tony Jelliffe was the President. In addition, Dr Gillian Vaughan Hudson became their medical advisor.
They worked out what the purpose of the Association would be; giving information and support to people with lymphoma in an understandable way. Back then, the only books on the subject were medical texts. They decided to create two small booklets, which they wanted to be easy to understand and provide general advice and support. An answerphone was bought to take calls from patients, which was manned in the evening from 7-10pm in our home. Dad and mum got a whole range of local people involved on an answerphone rota to ensure that patients could contact someone if my parents were away or busy.
I am so proud of what my parents achieved. They put so much into the Charity and would always go the extra mile, something the staff at Lymphoma Action still do. The fundamentals of what my parents started are still very evident – the information, the Helpline services, the newsletter which is now a magazine, and it is still offering the same support and information to people. I really enjoy hearing about how the Charity is developing. My parents wanted to support people affected by lymphoma and it is with pride that I watch Lymphoma Action offer more and more ways of doing this.’
We are proud to have been supporting people affected by lymphoma for four decades - offering support, sharing information and building a community so that no one has to face lymphoma alone. We’re more determined than ever to transform the experience of people affected by lymphoma, and our 40th anniversary is a call to action to join us as we build a better future for everyone affected by lymphoma.