Report reveals £12k a year cost of living with motor neurone disease

People are raising money to help send former Carlisle United and Workington Reds favourite Tony Hopper and his young family on the trip of a lifetime after it was revealed he has been diagnosed with motor neurone disease. Tony and his wife Sue have set up a fundraising page that will help them take their three young sons to Disneyland. Tony and Sue at home with children L-R- Daniel,9, Jack,4, and Adam,7. WEDNESDAY 15th FEBRUARY 2017. DAVID HOLLINS

The importance of Tony Hopper’s fundraising efforts for a motor neurone disease charity has been highlighted by a new report revealing the cost of living with the disease.

Think-tank Demos claims people with MND and their families spend £12,000 on average every year as a direct result of the disease. That includes costs such as adapting the house, care and assistance around the home, and increased energy bills and travel insurance.

The cross-party think-tank is urging action to ease the financial impact of living with the disease.

It also suggests fundraising campaigns like that led by former Carlisle United and Workington footballer Hopper can make a real difference.

Hopper, who was in January diagnosed with bulbar-onset MND, is using a “fightback fund” to raise cash for the MND Association’s north and west Cumbria branch.

The campaign has so far raised more than £14,000 to help people in the CA postcode area and their families fighting the life-limiting illness.

The Demos report surveyed nearly 800 people living with MND and bereaved families in England, Wales and Northern Ireland.

The report makes a host of recommendations, arguing that health and social care professionals should ensure that people living with MND are pointed towards financial advice and support as soon as possible after diagnosis.

“Local authorities should consider topping up disabled facilities grants for people with rapidly progressing conditions, including MND,” Demos adds, also urging the Government to do more to help people with MND and bereaved parents and carers.

The MND Association has praised the Hoppers for their help in raising funds and awareness – a cause backed by the News & Star’s Fighting Back for Tony campaign.

Kathryn Sheldon, regional fundraiser for northern England, said: “We have been overwhelmed by the support we have received for the Hoppers and Tony’s fightback fund.

“This will make a real difference to the lives of other people in this area affected by MND.”

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