A cure for motor neurone disease (MND) could be “possible”, according to an expert, as a charity launched by a rugby legend unveils its five-year research strategy to give hope to those diagnosed with the condition.
The My Name’5 Doddie Foundation (MNDF), first set up in 2017 by the late Scottish rugby player Doddie Weir, will invest millions of pounds into research for treatments.
Mr Weir died in November 2022, following a six-year-long battle with MND.
The charity’s aim will be to effectively deliver treatments to slow the progress of MND, while also working towards the goal of finding a complete cure.
And Professor Ammar Al-Chalabi, director of the MND Research Centre at King’s College London, said finding a cure is now a real possibility.
He said: “When I started MND research almost 30 years ago it seemed ridiculous that an effective treatment might be possible.
“Now a cure is a possibility, although a treatment that dramatically slows MND is more likely. Both are still somewhat in the future.”
The money provided by charities is vital to driving research into treatments and an eventual cure, the professor added.
He said: “Research is expensive, however, and My Name’5 Doddie Foundation and other MND charities are crucial in funding it.
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“They drive the cutting-edge stuff that pushes the field forward as well as the important ‘slogging away at it’ work that is essential to keep everything going.
“We are only where we are because of MND charities and the people who fundraise so effectively.”
Effective treatments ‘aren’t too far away’
Doddie Weir was inspired to set up a charity because a diagnosis of MND seemed to be without hope.
MNDF’s new five-year strategy, known as the Catalysis a Cure strategy, aims to drive forward research over the next five years with a commitment by 2028 to have invested in developing new treatments and improving early diagnosis.
It will also improve biomarkers which indicate whether treatments are working or not.
The organisation has committed around £8.5m to research and was also one of several UK organisations to successfully campaign for a UK government commitment of £50m for MND research.
Jessica Lee, director of research at MNDF, said: “We believe that effective treatments to slow or stop disease progression aren’t too far away.
“By working closely with our remarkable research community and supporting the adoption of new approaches and ways of thinking, we will accelerate the journey towards making these treatments a reality.”
Sports broadcaster and chief executive of the charity, Jill Douglas, added: “Doddie’s greatest frustration when he was diagnosed with MND in 2016 was the lack of hope for people faced with such devastating news.
“He wanted the Foundation to relentlessly work towards a world where that is not the case, and we are beginning to see real progress.
“There is huge momentum in MND research, and backed by the thousands of fundraisers who support the Foundation, this bold and ambitious research strategy ensures we are in the best position possible to build on that and work with the MND research community to hopefully accelerate the development of new treatments.”
According to the NHS, motor neurone disease (MND) is an uncommon condition affecting the brain and nerves – it can also cause weakness and gradually worsen over time.
The condition mainly affects people in their 60s and 70s but can also affect adults of all ages.
There is no cure as of yet, but there are treatments to help reduce the impact it has on someone’s day-to-day life.
Some people can live with the condition for many years but it can also be fatal.
The NHS says MND can happen gradually and may not be obvious initially. Here are some of the early symptoms:
• Weakness in ankle or leg, leading to difficulty climbing stairs
• Slurred speech, which may develop into difficulty swallowing some foods
• A weak grip
• Muscle cramps and twitches
• Weight loss
• Difficulty stopping yourself from crying or laughing in inappropriate situations
A workman saved a seven-year-old boy from a burning car in the aftermath of a deadly crash caused by a suicidal ex-pilot, an inquest has heard.
The schoolboy’s rescue came following the collision on the M6, which killed former RAF man Richard Woods and four others, in October last year.
Last week a coroner ruled that Woods, 40, took his own life by deliberately driving his Skoda the wrong way down the motorway while drunk and hitting a Toyota Yaris head-on.
The driver of the Toyota, Jaroslaw Rossa, 42, was also killed, along with his two sons, Filip, 15, and Dominic, seven, and his partner Jade McEnroe, 33.
Cockermouth Coroner’s Court heard on Thursday that Ms McEnroe’s son was also in the car but survived after workman Gavin Walsh came to his rescue at the scene, which was near Tebay services in Cumbria.
In a statement to the inquest, Mr Walsh said he was a passenger in a transit van travelling to Scotland when he witnessed the crash.
He jumped out of the vehicle and used a jack to smash the rear windscreen of the Toyota and pulled the boy out of the burning vehicle.
Mr Walsh said: “We really did try, I can assure everyone we did our best. We only had minimal time.
“I saved a life that day and I hope never to witness anything like that again.”
He added that he has never stopped thinking about the boy, and said: “I hope we will meet again one day and I will give you a massive hug.”
At the time, the family were returning to Glasgow from a trip to Legoland in Windsor, Berkshire.
The inquest heard that Wood, who was travelling at a speed of at least 65mph, would have been charged with manslaughter had he survived.
Recording conclusions of unlawful killing, Cumbria assistant coroner Margaret Taylor said: “I found that Jaroslaw, Jade, Filip and Dominic died as a consequence of the unlawful acts of another driver.”
The inquest heard how Mr Woods, from Cambridgeshire, had served a distinguished 14-year career in the RAF and was a flight instructor for BAE Systems at the time of his death.
Image: Jade McEnroe. Pic: Cumbria Constabulary
Image: Dominic and Filip. Pic: Cumbria Constabulary
In Ms Taylor’s record of inquest, Mr Woods was said to have been experiencing “a number of stressors in his life” and had a “history of harmful use of alcohol”.
Following the crash, he was found to be nearly four times over the legal drink-drive limit and a two-thirds empty bottle of gin was found in his car.
On the day of his death, concerns had been raised over his behaviour at a work conference near Preston in Lancashire.
Mr Woods failed to return to his seat after lunch and was later spotted driving erratically and swerving across three northbound carriageway lanes on the M6.
After pulling onto the hard shoulder, he then proceeded to U-turn and drove southward on lane three.
Image: Filip, Dominic and Jaroslaw Rossa. Pic: Cumbria Constabulary
Detective Sergeant Deborah Story, from Cumbria Police, told the inquest that Mr Woods would have been prosecuted on four counts of manslaughter had he lived.
She said hypothetical charges of murder were considered by detectives but not thought appropriate because of a lack of information that Mr Woods knew the family or anything that provided a link between them.
Ms McEnroe’s parents, Marie McEnroe and George McNellis, told the coroner they thought it was “murder”.
A statement from the mother of Filip and Dominic, and the ex-wife of Mr Rossa, Kamila, was read out at the inquest.
She said Mr Rossa, known as Jarek, was born in Poland where they became a couple and went on to have three boys.
He loved playing computer games and had “lots of friends”, she said, and worked at the Wagamama restaurant in Silverburn, Glasgow.
She said she was “devastated” over the deaths, adding: “Our lives will never be the same.
“I am heartbroken at the passing of my beloved angels Filip and Dominic.”
Marie McEnroe said her daughter, a spa therapist, had been in a relationship with Mr Rossa for about two-and-a-half years.
She said Jade had been a “brilliant mother” to her only child, was “really happy” with Mr Rossa and it was “lovely chaos” when all the boys were playing together.
Ms McEnroe added: “Life changed forever that day”.
Ms Taylor praised the “selfless acts of bravery” from those in the aftermath of the collision, including Mr Walsh, who she said went towards the burning car “without hesitation for his own safety”.
The coroner added: “Without his swift response, Jade’s child would also have perished.”
Addressing the bereaved family members, she said: “Your loss is unimaginable but you have conducted yourself with dignity and I thank you for that. I wish you strength for the future.”
Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK.
A ‘vile’ former police officer who was caught in a sting operation after travelling to meet what he thought was a 14-year-old boy has been jailed.
Thomas Kettleborough, 35, then an inspector with Avon and Somerset Police, was arrested in July 2023 while attempting to meet up with ‘the teenager’ after communicating with him on Grindr and Snapchat.
However, he was actually speaking to undercover officers.
After being detained at a car park in Bristol, officers found a bag in the boot of his car containing “an assortment of sex toys, condoms and bondage equipment, including a pair of limb restraints,” Exeter Crown Court heard.
More than 150 indecent images of children were also discovered on his phone and computer.
Kettleborough used the apps to have sexually explicit chats with the teenager, using the name Liam, while claiming to be 28, prosecutors said.
In February, he pleaded guilty to several child sex offences, including attempting to engage in sexual communication with a child and attempting to cause or incite a child to engage in sexual activity.
Last month he was sacked by Avon and Somerset Police and barred from policing for gross misconduct.
He was sentenced to two years and eight months in prison on Thursday.
Assistant Chief Constable Joanne Hall, from Avon and Somerset Police, said the public would be “appalled by the vile and manipulative actions of this former officer”.
She added: “He was caught following a policing operation designed to keep children safe which has resulted in his wider offending being identified.”
Detective Inspector Dave Wells, who led the investigation, said Kettleborough’s crimes took place over four years,
The former officer held positions of trust in the police, the Sea Cadets and the Royal Lifesaving Society, but “concealed his true identity through an online persona as ‘Liam’, ‘L S’ and ‘Liamss5506’,” Mr Wells said.
Mr Wells added: “Specialist investigators are ready to listen and investigate any reports relating to Thomas Kettleborough or any other matters of concern. I want people to know that they will be believed.
“Thomas Kettleborough is now behind bars. I hope if there are others that have been affected by this case, they now feel empowered to tell someone, if they are ready to do so.”
Lee Bremridge, defending, said Kettleborough had shown genuine remorse for his crimes.
He added that the former officer had “done everything that he can attempt to do to try and understand why it is he committed the offences that he did.”
Kettleborough was also handed an indefinite Sexual Harm Prevention Order and will be on the Sex Offenders’ Register for life.