Fellow MND sufferers and former sports stars Rob Burrow, Stephen Darby and Doddie Weir
Stephen, 32, said: "It's all about timing and there is no better time to do it than now. With the little funding researchers have they are making strides into getting where we need to be but to speed that up, and give those with MND hope, we do need more from the Government."
The right back, who also played for Bradford City and Bolton Wanderers, was forced to retire aged 29 when diagnosed with the disease in September 2018. The hammer blow came just three months after he married Steph Houghton, now 33, the co-captain of Team GB's women's football team at the Tokyo Olympic Games.
Speaking from their home, Stephen said: “A third of people diagnosed with MND die within a year, and half die within two years of diagnosis.
“These figures show how devastating the disease is. It affects your arms, your legs, your speech, your swallowing, your eating, it affects your muscles.
“To see the physical effects that MND causes is heartbreaking. It truly is a horrific disease.
“And to add on top of that the fact we don’t have any treatment or cure for it is really hard for those diagnosed with MND.”
He added: “It is not just the person diagnosed with MND who it affects. It also affects your wife, your partner and the family and friends going on this devastating journey with you. They see the day-to-day impact that MND has. They see you struggle with your hands, or struggle to feed yourself, or struggle to dress yourself, struggle to walk.
“For them they probably do at times feel helpless because all they want to do is try to help. But I could not have done the past three years without my wife and family ‑ and their support has meant the world to me.”
Stephen Darby looks back on his career in 2018
Stephen playing for Bradford City in 2015
The former England under-19 defender, who started his career at Liverpool’s academy, said the moment he was told he had the disease was a “lonely” experience despite the unwavering support of his wife, family and friends.
The kinship offered by fellow MND sufferers, including former RAF airman Chris Rimmer, with whom he started a charitable foundation, and former rugby players Rob Burrow and Doddie Weir, has inspired Stephen.
He said: “I find I get a lot of strength from talking to other people with MND.
“Once you are given the diagnosis you are basically told to go home and come back in three months and they’ll check how you’re doing.
“There is nothing that the doctors can do so you do feel lonely, whereas when you speak to other people who have got MND you find a massive amount of support because they are living with the disease.
“My bond with Doddie Weir and Rob Burrow has really helped.
“Obviously I wish we weren’t in touch because that would have meant we weren’t in the situation we are now but through unfortunate circumstances we have become great friends.
"It's really difficult seeing what Rob and Doddie are having to go through but at the same time they are absolute inspirations and the work that they are doing to raise awareness of MND and to try to make a difference is absolutely massive."
The Darby Rimmer MND Foundation has raised more than £800,000 in the past 18 months but Stephen says it has also been difficult seeing his friend, who was diagnosed with MND in 2014, left only able to move his eyes.
He said: “It is tough at the moment. About six months ago he was fitted with a tracheostomy.
“He can’t move any part of his body apart from his eyes and that is how he communicates through an eye-gaze machine. The tracheostomy helps him breathe but it is a tough one.
“I set up the foundation with him and it was such a big support for me because at the time I didn’t know what was to come or what I was going through.
“He had been through that and his support and advice and experience of what he had been through at that time, and even now, is an absolute inspiration.”
Stephen said he made a decision with Steph, who also captains Manchester City Women and England’s women’s team, to have a positive outlook after his diagnosis and use his public profile to help other sufferers.
“When I was first diagnosed my wife and my family said straight away, what can we do to try to help others who are in the same situation?
“The prognosis isn’t great. Life expectancy is two to five years, so whether that is to raise money to grant support, to help those who need feeding equipment, house adaptations, whatever it may be, but also to help fund research.”
He believes an effective treatment or cure for the disease can now only be found with Government funding for a £50million MND Research Institute, which was first put forward by My Name’5 Doddie Foundation and backed by the MND Association, and now the Sunday Express.
He said: “The timing is crucial because there is so much good work that has gone on in the past four or five years for research into MND. But to find that breakthrough, I think it is massive now that we ramp up the research ‑ and the only way we can do that is by increasing the funding.
“MND research receives more funding from charities than it does from the Government. That needs to change.”
Stephen Darby and Chris Rimmer
£50m to nail this disease: politicians unite in cash plea to Javid
By David Stephenson, Sunday Express deputy political editor
Politicians from across party divides are joining forces to urge Health Secretary Sajid Javid to invest £50million in the pursuit of new treatments for MND.
Scientists are within touching distance of exciting treatments, according to Conservative Northampton South MP Andrew Lewer who chairs a cross-party group of MPs who want to see a cure.
Mr Lewer argues it is time to ramp up research funding. Just as research into HIV and Covid-19 resulted in game-changing breakthroughs, he is confident that a cure is not an "impossible pipe-dream".
He said: "We have a track record in this country of research leading to cures for diseases which had hitherto seemed incurable... A cure for this would save thousands and thousands of lives and prevent thousands and thousands of families from having the experience of seeing a relative suffer."
Brendan Clarke-Smith, the Conservative MP for Bassetlaw, a vice-chairman of the all-party group, has written to Mr Javid, urging him to unlock the cash.
He said: "MND is a devastating neurodegenerative illness which affects one in 300 people. Over 200,000 of the current UK population will die of MND unless effective treatments are found.
"However, with appropriate levels of investment, UK scientists are confident that current trials will deliver licensed treatment for some forms on MND in just a few years... A cash injection of £50million for MND research would not only help to establish the UK as the leading player in the global field of neurological research, but would also bring significant opportunities for inward investment, growth and highly skilled jobs across the UK."
Christine Jardine, the Liberal Democrat MP for EdinburghWest and a fellow vice-chairwoman of the all-party group, said: "The lack of funding for research is unacceptable. Too often it is included under general neurological research which, while helpful, is far from what is needed to get to the cause of an unspeakably cruel condition and find a cure."