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
Photographed in a beam of sunlight, Prince William walked through Westminster Abbey with the King behind him.
The ornate robes of the Order of the Bath service, two weeks ago, felt like a world away from the more modern image he wants to portray.
But as a man bestowed with so many traditional titles, it’s a new role he’s shaping for himself that is more intriguing – William, the quiet disruptor.
Image: The Prince of Wales at the Order of the Bath Service at Westminster Abbey. Pic: Andrew Parsons / Kensington Palace
In a week when Time Magazine named the Prince and Princess of Wales in its top 100 philanthropists list for “modernising royal philanthropy”, I spent the week following the prince on various engagements.
None of them particularly headline-grabbing, but all examples of how he’s setting out to do things differently, or underlining the challenges, and potential criticisms, he faces doing things his own way.
Take Tuesday, for example.
We weren’t expecting him to turn up as we waited at the Soho Hotel in London to watch a new series of films about the dangers faced by wildlife rangers, a project described as “the brainchild” of Prince William.
But all of a sudden, there he was in the room, taking the mic to explain what it really means to him.
Speaking about his drive to “give a voice to the voiceless”, it was indicative of what feels like a greater desire from him to articulate more publicly what he stands for.
Since November, when he described how he wanted to carry out his duties with “a smaller r in the royal”, you’ve got the sense William, and his team, have further wanted to cement in our minds where he sees his role.
From conversations this week, with those who work closely with him, the word “convening” came up time and again; the prince doesn’t want to waste what he knows is a unique position, to bring people together, start conversations and support those who are already doing amazing things in their communities.
Image: Prince William recording the opening scenes for a documentary about rangers and the dangers they face.
Pic: PA
Shifting the dial
But this isn’t just about him personally.
This is now a man whose vision for the monarchy, I’m told, is increasingly driven by a desire to “shift the dial on global leadership” where others may be failing.
With palace sources telling me he’d be more than happy to “be acknowledged” as a quiet disruptor, despite the criticism his new ways of working might bring.
Those who’ve known him a long time will tell you this compulsion to do things differently has been there for some time.
Image: Prince William during a recent royal visit.
Pic: PA
Dr Tessy Ojo, the chief executive from The Diana Award, has worked with Prince William and Prince Harry for over 20 years.
She said: “They would never do royal engagements from the sense of cutting the ribbon or simply being poster people. We were very clearly warned if you wanted any form of engagement, it almost had to have a whole strategy behind it.”
She told me she has always sensed how much William appreciates the responsibility that comes with his role, especially in a world where “there’s a massive demand on leadership… there’s a lot of distrust on leaders”.
“What people wanted 40 years ago from their monarch is completely different,” she said.
“I think it’s super important that as the heir, as the next monarch, he’s very in tune with what the people want, and what people expect. And being able to be that 21st century monarch, who is a present dad, but also a leader who understands how to use your leadership for social good”.
A modern royal
Wednesday, and William walked into a sweaty, but infectiously positive, community hall in Leith in Edinburgh.
No ribbon cutting here, but this is the kind of visit the prince now sees as a big deal, “impact” the buzz word ahead of any engagement now.
A very lively game of football launching what they hope will be a long-term tie-up between the Royal Foundation (their charitable trust), Leith community centre and Street Soccer Scotland.
Image: The Prince of Wales playing football during the visit to Leith.
Pic: PA
Image: Pic: PA
On Thursday, the sight of a guard of honour saluting the prince and princess, as the national anthem was played alongside HMS Glasgow, just emphasised the regular handbrake turns they face from the more relaxed to the formal, as they want to make the monarchy feel connected and relevant.
Then there is family to consider, in a way that past generations just haven’t.
Their working diaries are now arranged around their children. They’ve made no secret of that.
On paper, it means fewer engagements compared to other members of the family, and it has led to mutterings of that word no one within the palace wants to hear: “workshy”.
Image: The Prince and Princess of Wales attend the naming ceremony for HMS Glasgow.
Pic: PA
Making an impact?
But talking to people in Glasgow, away from the royal visit, I overwhelmingly found most thought William was setting a good example by putting family first.
What people were less clear on was his “social impact” work and what that is all about.
The community projects may not necessarily grab as much attention as William and his advisors want, but what will be fascinating to watch is the potential long-term impact of this new kind of ethos.
As the Prince and Princess of Wales stood on the steps of Buckingham Palace at a garden party on Tuesday, pausing for the national anthem, you can’t help but wonder whether those traditional elements of royal life could face a shake-up when one day he leads the firm full time.
Understandably, no one likes to talk about transition, and Prince William certainly doesn’t shout about his thoughts on what will come.
South Western Railway (SWR) has been renationalised this weekend as part of the government’s transition towards Great British Railways.
The train operator officially came under public ownership at around 2am on Sunday – and the first journey, the 5.36am from Woking, was partly a rail replacement bus service due to engineering works.
Image: Pic: PA
So what difference will renationalisation make to passengers and will journeys be cheaper?
What is nationalisation?
Nationalisation means the government taking control of industries or companies, taking them from private to public ownership.
England’s railway lines are currently run by train operating companies as franchises under fixed-term contracts, but Labour have said they want to take control of the lines when those fixed terms end.
Image: Transport Secretary Heidi Alexander. Pic: PA
In its manifesto, the party vowed to return rail journeys to public ownership within five years by establishing Great British Railways (GBR) to run both the network tracks and trains.
Transport Secretary Heidi Alexander, who travelled on the first renationalised departure from London Waterloo, said, before boarding, it was “a new dawn for our railways” and “a watershed moment”.
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“But I know that most users of the railway don’t spend much time thinking about who runs the trains – they just want them to work,” she added. “That’s why operators will have to meet rigorous performance standards and earn the right to be called Great British Railways.”
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How reliable are UK trains?
How will ticket prices be affected?
Labour have argued cutting off payments flowing into the private sector could save the taxpayer £150m a year.
But the government has not explicitly promised the savings made from nationalisation will be used to subsidise fees.
It is unlikely rail fares will fall as a result of nationalisation, rail analyst William Barter told Sky News.
“The government could mandate fare cuts if it wanted to, but there’s no sign it wants to,” he said.
“At the moment, I’m sure they would want to keep the money rather than give it back to passengers. The current operator aims to maximise revenue, and there’s no reason the government would want them to do anything differently under government control.”
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0:54
UK has most expensive train tickets in Europe
What difference will it make for passengers?
Britain’s railways are frequently plagued by delays, cuts to services and timetable issues, but Mr Barter said nationalisation will make very little day-to-day difference to passengers.
There was “no reason to think” the move would improve issues around delays and cancellation of services, he said.
“It’s going to be the same people, the same management,” he explained.
“The facts of what the operator has to deal with in terms of revenue, infrastructure, reliability, all the rest of it – they haven’t changed.”
Image: Pic: iStock
Which services are next to be nationalised?
In the longer term, the move is likely to bring “a degree of certainty compared with relatively short-term franchises”, Mr Barter said, noting the government would only want to renationalise a franchise “because in one way or another something very bad is going on in that franchise, so in a way it can only get better”.
It also means the government will have greater accountability for fixing problems with punctuality and cancellations.
Mr Barter said: “If this is the government’s baby, then they’re going to do their best to make sure it doesn’t fail. So rather than having a franchise holder they can use as a political scapegoat, it’s theirs now.”
He added: “In the short term, I don’t think you’d expect to see any sort of change. Long term, you’ll see stability and integration bringing about gradual benefits. There’s not a silver bullet of that sort here.”
Britain’s railway services were privatised in the mid-1990s.
Image: South Western Railway came under public ownership at around 2am on Sunday. Pic: PA
Now, all services run by private companies will be renationalised as contracts reach the end of their minimum terms, with the process due to be completed by the end of 2027.
The next operator’s services to be brought under public control will be c2c – which runs between London and Essex – on 20 July, with Greater Anglia following in October, before seven more companies transfer over when their franchises end in the future.
Operators that were already under public ownership are LNER, Northern, Southeastern and TransPennine Express.
Alan Yentob, the former BBC presenter and executive, has died aged 78.
A statement from his family, shared by the BBC, said Yentob died on Saturday.
His wife Philippa Walker said: “For Jacob, Bella and I, every day with Alan held the promise of something unexpected. Our life was exciting, he was exciting.
“He was curious, funny, annoying, late, and creative in every cell of his body. But more than that, he was the kindest of men and a profoundly moral man. He leaves in his wake a trail of love a mile wide.”
Yentob joined the BBC as a trainee in 1968 and held a number of positions – including controller of BBC One and BBC Two, director of television, and head of music and art.
He was also the director of BBC drama, entertainment, and children’s TV.
Yentob launched CBBC and CBeebies, and his drama commissions included Pride And Prejudice and Middlemarch.
Image: Alan Yentob (left) with former BBC director general Tony Hall in 2012. Pic: Reuters.
The TV executive was made a Commander of the Order of the British Empire (CBE) by the King in 2024 for services to the arts and media.
In a tribute, the BBC’s director-general Tim Davie said: “Alan Yentob was a towering figure in British broadcasting and the arts. A creative force and a cultural visionary, he shaped decades of programming at the BBC and beyond, with a passion for storytelling and public service that leave a lasting legacy.
“Above all, Alan was a true original. His passion wasn’t performative – it was personal. He believed in the power of culture to enrich, challenge and connect us.”
BBC Radio 4 presenter Amol Rajan described him on Instagram as “such a unique and kind man: an improbable impresario from unlikely origins who became a towering figure in the culture of post-war Britain.