"Some people have got in touch with us because they read Tony Hopper's story"

As the cash continues coming in, an increased awareness of the condition is already providing a boost, says Eric Tiffin, leader of the north and west Cumbria group of the Motor Neurone Disease Association.

"Because Tony has brought this to the forefront, it has been helpful for others with MND," Eric says.

"There are some people who have got in touch with us because of reading about him. That is so positive."

Former Carlisle United and Workington footballer Tony's courage in sharing his story with the community has brought an incredibly difficult condition into the spotlight. The community is responding in a big way, and it is the group overseen by Eric that will benefit most.

Covering the CA postcode, the north and west Cumbria branch supports people living with MND and their families. That could mean grants for chairs, beds, stairlifts and other equipment, white goods for the home, short breaks, visits from trained professionals and various other aspects of life that would normally be a drain on family finances.

It is real and essential help, highlighting the benefit of active fundraising and awareness, something Eric and his wife Freda know all about.

Eric, who lives in Penrith, was himself diagnosed in 2004, a process that started when he found himself unable to lift certain heavy items in his farm job.

A visit to the doctor for an unrelated problem highlighted the fact one of his legs was suddenly smaller than the other, and the issue persisted over the weeks, as Eric then suffered a fall that he struggled to explain.

A series of tests followed before Eric was eventually diagnosed with MND. "You think of everything else, and this is the last thing on the list," he says.

Eric has been dealing with amyotrophic lateral sclerosis (one of four different types of MND) since then and, as time went on, he decided to find out more about the condition. "When I was diagnosed in Newcastle, I was told that, if I planned to do anything with my family, now was the time to do it, because of how it was going to develop," he says.

"I took that advice, took my family to see some friends, and then I packed in work. About six or seven months later, I rang the branch contact and went to their meeting at Carlisle."

This was the start of Eric and Freda's involvement in activities which have since contributed to many thousands of pounds being raised. One of the first was a large auction held at Brunton Park, Carlisle United, while last year alone they estimate some £28,000 came in to the north and west Cumbria group.

They are proactive, sensitive people, respectful of those sufferers who wish to remain private, but also keen to help those who do approach them - and also spread the message.

Each month there are support meetings, either in Distington or Carlisle, open to any of the 27 people in north and west Cumbria who have been diagnosed with MND. A Christmas lunch, near Penrith, attracts more than double that number, the invitation extended to those who have helped the group over the year.

They organise events themselves, attend others, and support anyone setting up their own campaign. They can also liaise with the MND Association at their central base at David Niven House in Northamptonshire, where any money raised for research goes.

"It is the person's choice where the money goes," Eric stresses. "If they want it all to stay in this area - which is what Tony's campaign has stated - that's what will happen. It won't get touched by anywhere else."

Profile has been further raised in the last three years by Penrith haulage firm MGL Transport, who carry a huge advertisement for the MND Association on the back of one of their lorries.

There are other, particular ways the group can help families. "Two years ago a young person's grant was started," Eric says. "The young person must be a family member of a person with MND, up to 18 years old.

"We know how hard it can be, financially, when everything stops, if the person with MND is a wage-earner. The teen years, where social life can come to a stop, even helping with accessing a computer, or driving lessons, can be a real help.

"Another grant is a specialist grant for unpaid carers, for example the wife or partner. They can use it to have a break at weekends."

Positive information, that can help with such a cruel condition, continues. "The north and west Cumbria branch are soon going to get a specialist MND nurse," Eric says. "They will be based in Eden Valley Hospice, initially for two-and-a-half years, although we're hoping to secure funding for an extended period.

"And that's all down to the ice-bucket challenge of 2014."

That initiative, which went viral across the world as millions of people tipped freezing water over their heads, raised more than £7m for MND in the UK. Much of that money has helped bring forward research projects; hopefully another inch forward in the bid to find a cure.

This also helps to demonstrate that anything raised now will make a difference to someone, somewhere. Eric and Freda have met Tony and his family to offer support for their own Fightback Fund, and are advising others who want to help.

Eric's own home was adapted in 2008, helped by a disabled facilities grant from the council, and this allows him to use a wet room, breathing machine and easily accessible bed on the ground floor of his Penrith home.

While he says he has, like all sufferers, had to fight the hard emotional challenges of living with MND, his involvement with the group has also lifted him.

"Without getting this disease," says Eric, originally from Harraby in Carlisle, "I'd never have met the Queen." He recalls how he and Freda represented the MND Association - whose patron is Princess Anne - at Her Majesty's garden party in July 2011.

"I went there on my wheelchair, but I got off the chair once we met her," he says. "There was no way I wasn't bowing to that lady. It was an experience I never thought I'd have."

Tony Hopper, his family and friends are also lifting people even as they go through their own challenges, partly in the public eye. Their brave stance is being backed all the way by the News & Star , and our Fighting Back for Tony campaign.

"A lot of people who are diagnosed don't want you to know about it, and that is absolutely fine - it's an awful disease, and I think I've seen everything," Eric says.

"In my own case, I just thought I would do what I could to raise awareness. It wasn't a very well-known disease at the time, and that's why I still keep doing it.

"The more help we get the better, and you've now got someone like Tony who is prepared to lift the profile of MND in a very positive way. The support we've had from the family and his friends has been absolutely tremendous.

"Thanks to them, the message is spreading."

To contact Eric and Freda Tiffin about the MND Association's north and west Cumbria group, call 01768 892271.

Anyone affected by motor neurone disease can also contact the MND Association for support through Sue Muller, regional care development adviser for Lancashire and Cumbria, on 0345 3751841 or 07876575029, email sue.muller@mndassociation.org

To donate directly to Tony Hopper's Fightback Fund, visit https://www.justgiving.com/fundraising/Tony-Hopper