The importance of Tony Hopper's fundraising efforts for a motor neurone disease charity has been highlighted by a new report that reveals 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, which will help people in the CA postcode area and their families who are fighting the life-limiting illness.

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

It also revealed that more than two-thirds of families use their savings to cope with the extra costs of MND during the illness, while only one in five people living with MND considered the financial support they receive as "adequate".

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.

Demos also urge third sector organisations who provide financial support to people living with MND to review how much funding is used to pay for assistance around the home, and consider redirecting funds to this particular cost.

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

The report's author, Simone Vibert, said: "Being diagnosed with a progressive, terminal condition such as MND is one of life’s biggest challenges.

"People with MND and their loved ones need to focus on making the most of their time the time they have left with each other, not worrying about their finances. Yet our research shows that many people with the disease are living with an overwhelming financial burden.

"Minimising the impact of the extra costs of the disease is critical to reducing this burden. The financial support available needs to be enhanced and made more easily accessible. It is also important that people with the disease are signposted to financial advice as soon as possible after diagnosis.”

The MND Association have praised the Hoppers for their help in raising funds and awareness - a cause being 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."

To donate, visit https://www.justgiving.com/fundraising/Tony-Hopper