Our Founder, Sarah Matheson
Sarah was diagnosed with multiple system atrophy (MSA) in 1993 and was fortunate from the outset to be under the care of specialists who recognised the symptoms and monitored her condition carefully.
However, Sarah was dismayed by the lack of readily available information about MSA. Any information was hidden in the terminology of medical papers and little attention was paid to the treatment, psychological issues and everyday experiences of living with MSA. Sarah felt this affected her ability to understand the disorder and fully participate in her own management and care decisions. She sometimes felt isolated because of the general ignorance about the condition.
With typical energy Sarah decided to take the initiative and try to provide what, in her experience, was missing for people with MSA, their families and carers. After much thought and discussion she decided that the best way forward was to create a support group. Drawing on her previous experience of charity work, Sarah rallied her friends and family into fundraising and persuaded some of them to become trustees. In 1997 the Sarah Matheson Trust became a registered charity. Sarah died in 1999. In 2010 the charity was renamed Multiple System Atrophy Trust and its work continues in her memory.