The RSA is very sad to share the news that Anne Mawdsley MBE died in North Staffordshire Hospital on Sunday 12th October, age 72.
A leading light in raising funds for Raynaud’s and scleroderma research, it is important to celebrate Anne’s remarkable life and achievements and her family have planned a ‘Celebration Service’ which will take place on Friday 21st November at 11am at St Mary’s Church in her home village of Alsager, Cheshire, ST7 2EW.
Anne was 33 when she first developed symptoms of Raynaud’s. Initially her being out outside in cold weather would precipitate an attack. Eventually, as the symptoms became more frequent and severe, Anne had to give up working as a swimming teacher. Daily family life became increasingly challenging, particularly as she looked after her two sons, then both under two and a half.
When Anne appeared on a TV programme in 1982 to highlight Raynaud’s she received more than 400 letters from people desperate for information, and the Raynaud’s Association was born, raising money for research and offering advice to people with Raynaud’s.
In 1984, Anne heard a rheumatologist speak about scleroderma at a conference, and realised that she too may have this rare condition. She later wrote “I went to the library and looked it up in a medical encyclopedia, and was horrified to discover most people with scleroderma died within seven years of diagnosis. It was devastating. I was only 42 with two young boys”.
The charity, renamed the Raynaud’s and Scleroderma Association (RSA) following Anne’s diagnosis, went from strength to strength and has raised millions of pounds since it was founded. In 2014 the RSA is currently committed to over £2million worth of innovative research between now and 2016. Various University hospitals in London, together with institutions in Manchester, Liverpool, Bath and Oxford are currently benefitting from money donated to the RSA, helping in the battle for better understanding and management of disease. The president of the RSA is Professor Dame Carol Black DBE, and it was she, then as a clinician, who first treated Anne, at the Royal Free Hospital in London.
Globally, interest in scleroderma has grown in recent years – in the UK, across Europe, the USA and Australia. National and international collaborations are now undertaken to make best use of the current knowledge about this rare autoimmune connective tissue disease and build on existing findings – including with the aim of alleviating and better managing disease symptoms. In the UK, many of the seeds for this work were planted and nurtured by Anne’s tireless fundraising efforts.
“Anne really was one in a million and even raised a “cool million” in the last few years of her life to highlight the problems of Raynaud’s and scleroderma. Never one to duck a challenge in order to bring the disease to the public’s attention and raise millions for research into the cause and treatment of Raynaud’s and Scleroderma, and also to help all those who suffered with the diseases. A tireless champion for the Association and its members for over thirty years, and an inspiration to all those involved with Raynaud’s and Scleroderma – both professionals, (who were in awe of her), patients, carers and the general public – we will all miss her” David Scott, RSA Trustee, Chief Medical Advisor NRAS.
Having a patient’s perspective on things meant Anne had the knowledge and expertise to talk with those who had the conditions as well being equally comfortable liaising as an ‘expert patient’ with clinicians and medical professionals.. She was also well known in the pharmaceutical industry with contacts in numerous companies.
Anne was given the MBE in 1993 for her services to the charity which she first set up from the landing at her home! Professor Chris Denton, Consultant Rheumatologist at The Royal Free hospital and Vice President RSA said “Anne was a unique and courageous individual who inspired everyone that she met, and who had outstanding vision, ability and tenacity that permitted her to build the Raynaud’s and Scleroderma Association from humble beginnings into the vibrant and effective organization of today. She will be enormously missed but leaves an invaluable legacy for future scleroderma and Raynaud’s patients, and for those treating and researching these neglected conditions.”
In her retirement Anne set up The Raynaud’s and Scleroderma Care & Support network to continue to be in touch with people, share her experiences and offer hope and support through what can sometimes be difficult times for those with the conditions.
The RSA is Anne Mawdsley’s legacy, it continues to support, encourage and help people with the conditions, their families and the professionals involved with their care.