Renfrewshire is home to the Scottish Huntington's Association, the country's only charity dedicated to supporting families affected by this degenerative brain disorder.
Huntington's Disease (HD) is a hereditary progressive condition that causes changes to muscle control, thinking processes and may cause long-term mental health issues. The average age of onset is between 33 and 45, there is currently no cure for HD. Those living with the condition will require 24 hour care as it progresses into its later stages. It is also hereditary with each child of someone diagnosed with HD is at 50% risk of developing the condition themselves.
Prevalence of Huntington’s disease generally has increased threefold in the last twenty years. There are estimated to be 1,100 people in Scotland living with the condition but as many as 5,000 could be potentially at risk.
Services provided for those families affected by the disease includes HD specialist care and the world's only HD youth support service. Although based in Paisley they run nine regional service centres: Glasgow, Lothian, Lanarkshire, Ayrshire, Highland, Grampian, Tayside, Fife and Angus.
SHA services are funded through partnership with the NHS and local authorities, but with pressures on public spending, the SHA needs to find around £300,000 every year to keep its group of dedicated HD Specialists delivering day-to-day support to families living with Huntington's disease.