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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

TFN is published by the Scottish Council for Voluntary Organisations, Mansfield Traquair Centre, 15 Mansfield Place, Edinburgh, EH3 6BB. The Scottish Council for Voluntary Organisations (SCVO) is a Scottish Charitable Incorporated Organisation. Registration number SC003558.

Funding for brain disorder financial advice project

This news post is over 7 years old
 

​Three new specialists employed to provide money matters help to those living with Huntington's disease

The Scottish Huntington's Association has secured £357,000 from the Big Lottery Fund to set up a project offering financial advice to families living with the degenerative brain disorder.

The three-year Financial Wellbeing project will employ three specialists to advise and support families as the disease means that people often have to give up work at a young age.

“This project will significantly enhance our capacity to support people living with Huntington's disease with the many money issues they face as well as assist staff in their work,” said the charity's chief executive, John Eden.

People living with Huntington's disease face the reality of eventually not being in control of their own destiny and need to plan ahead for this time

“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 Huntington's disease 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.”

Huntington's disease 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 the condition is at 50% risk of developing the condition themselves. There is no cure.

It is estimated that there are around 1.100 people living with the condition in the country with another 5,000 potentially at risk.

 

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