Better financial advice and planning for families living with the degenerative brain disorder Huntington’s disease (HD) is now on hand after a successful bid to the Big Lottery Fund.
The Scottish Huntington’s Association (SHA), the only charity in the country supporting HD families, has secured £357,000 to set up a Financial Wellbeing Project that will run initially for three years.
The project will employ three specialists to advice and support families through the complex world of personal and family financial planning.
‘This project will significantly enhance our capacity to support people living with HD with the many money issues they face as well as assist staff in their work,’ said the charity’s chief executive, John Eden.
‘The debilitating nature of the disease means that people need to stop working relatively early with 67% of families affected living on an income below the national average and 33% living below the poverty line.’
‘But as well as help with day to day finances people living with HD face the reality of eventually not being in control of their own destiny and need to plan ahead for this time. We are now in position to help them through these difficult decisions that need to be taken.’
HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.
It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.
‘Having to cope with the deteriorating health which is the reality of HD is hard enough, without having to worry about money as well, I’m sure this new project will make life easier for the many families who struggle financially due to having the condition,’ added John.