A UK charity set up by former footballer Stephen Darby and British Forces Veteran Chris Rimmer is raising wider awareness of Motor Neurone Disease, to fund and assist research into the condition. 

Motor Neurone Disease (MND) is a neurological condition which affects the nerves in the brain and spinal cord. In some countries it is known as ALS. MND affects a person’s arms and legs, resulting in the need of a wheelchair whilst losing the ability to do things like wash, feed and dress yourself.

It affects your ability to swallow food and drink which leads to the need of a percutaneous endoscopic gastrostom (PEG) feeding tube, to maintain nutritional intake as swallowing becomes impossible. Your voice is compromised and people are unable to talk meaning communicating is difficult.

Breathing muscles are also affected, which leaves you relying on a ventilator to breathe. All these symptoms occur whilst your mind is unaffected.

Chris Rimmer was diagnosed with Motor neurone disease (ALS) in June 2015 after over a year of progressive symptoms. At the time of diagnosis he was doing contract work for NATO in Afghanistan, prior to which he served in the British Military (RAF).

Four weeks after diagnosis, Chris returned to Afghanistan and completed a final tour before medically retiring in October 2015 aged 32.

Since the onset of symptoms in 2014 Chris has steadily progressed to his current physical condition. Unable to walk or even stand, his arms and hands have virtually no movement - only having enough strength to control a wheelchair.

Chris became unable to swallow food which has resulted in him having a feeding tube fitted for nutritional intake. He can no longer breathe on his own and requires 24/7 life support ventilation. Finally, Chris is losing the ability to communicate as his voice becomes increasingly weaker and less understandable.

Along the way, he has been admitted to hospital with a collapsed lung, secretion blockage in his chest, and on several occasions for stitches from falling due to leg weakness.

Chris Rimmer on stage at a Foundation event. He is in a wheelchair with a ventilator to help him breathe.

"All the physical symptoms have occurred whilst my mind and brain are not affected. I’m the same person who went the gym, played football and proudly served my country as I become increasingly locked inside my own body."

On 12 September 2018, Stephen Darby was forced to retire at the age of 29 after being given the diagnosis of motor neurone disease.

At the time of diagnosis, Stephen was still playing football at Bolton Wanderers and training every day. He had played professional football since the age of 17 and turned out for Liverpool, Swindon Town, Notts County, Rochdale, Bradford City and Bolton Wanderers.

Stephen's first sign of symptoms was a weakness in his hand and a twitching in his arm. For 12 months, Stephen was being treated for something different and at one point and things were looking quite promising. However, after 18 months of testing he was finally given the news that he had MND.

Testing consisted of MRI scans, EMG tests, nerve conduction studies and IV infusions each lasting 5 days, as well as lumbar puncture. Over the course of the last 2 and a half years, Stephen's symptoms have been progressing slowly. He now has weakness in both hands and twitching in his arms, legs, chest and tongue.

"Starting the foundation was a way of turning something so devastating into something positive. To have a positive impact on MND and to help those individuals and families living through it to support them."

Stephen Darby clapping the to the fans at a charity football match between his two former clubs Liverpool and Bradford City which was organised to raise funds for the Darby Rimmer Foundation in 2019.

CAFE is proud to congratulate Chris and Stephen on the fantastic work they are doing to raise awareness about MND. Our Media and Communications Assistant, Josh Emerson, is also aiming to complete a 1000-mile challenge by the end of the year, with all of the funds raised being donated directly to the Darby Rimmer MND Foundation.

Michael Rice, CAFE Media and Communications Manager, said, "We are so proud of Josh's fundraising efforts for this very important cause, and we wish him the very best of luck for completing his challenge. It is a reflection of Josh's character that he has undertaken this outside of his role at CAFE, and we applaud him on his tremendous contribution to the Foundation".

Earlier this month, CAFE published a report of our research project into access and inclusion for non-visibly disabled spectators and spectators with long-term health conditions, which is inclusive of those diagnosed with MND. 

CAFE hopes that the report will urge more clubs across Europe to commit to making their matchday experience accessible to all, allowing football to once again set best practice standards in accessibility.

Find out more about the Darby Rimmer MND Foundation, and about Josh's 1000-mile challenge on his JustGiving page.

Published 16/12/20