New research into a therapy for the currently untreatable mitochondrial depletion syndrome is to be funded by a UK charity.
The Lily Foundation provides help and support for families affected by the genetic disease.
The condition was brought into sharp focus by the case of Charlie Gard, who died a week before his first birthday as his parents fought to allow him to be treated in the US with a new form of treatment called nucleoside therapy.
Liz Curtis, founder of the foundation named after the daughter she lost at just eight months, says the research could provide the help families like hers so desperately need.
“Currently there are no treatments, and there is no cure for mitochondrial disease,” she said.
“So we need to keep looking to find something that will improve the quality of life for the families and the children who are suffering.”
The research, jointly funded by the Australian Mitochondrial Disease Foundation, will be undertaken at the Wellcome Centre for Mitochondrial Research in Newcastle.
Professor Robert McFarland from the centre hopes that it could expand the effectiveness of the therapy.
He said: “What’s available at the moment is very limited for a very specific form of mitochondrial DNA depletion syndrome.
“What we hope is the molecules that we are developing and testing in these cell will be much more effective at doing this job of repleting mitochondrial DNA and that we will be able to look at outcome measures in patients that will tell us if it’s been effective.”
Former Hollyoaks star Colin Wells and his actress wife Joanna have two children with the syndrome.
Rachael and Jo-Jo weren’t diagnosed until their teens, and said often the doctors they first visited were not aware of the condition.
They have both provided tissue samples to help scientists find a way to make the treatments more readily accepted by the body.
“It’s crucial research,” says Rachael, now 20. “And not only could it help people like me and my brother, it could mean advances in treatments for ageing, and even cancers.”
Mum Joanna sums it up succinctly when she says the therapy could be “the difference between life and death”.
The Wells family, and dozens of others facing similar challenges, attended a weekend of seminars and workshops provided by The Lily Foundation at a Midlands hotel this weekend.
For them, and thousands of others like them, the new research provides the potential hope of an effective treatment – or even a cure.
Prince William is to make the first official royal visit to Israel and the Palestinian territories in a five-day tour of the Middle East.
The Duke of Cambridge is scheduled to meet both Israeli Prime Minister Benjamin Netanyahu and Palestinian Authority President Mahmoud Abbas.
He will begin his trip in Jordan, meeting Al Hussein bin Abdullah II, heir to the Jordanian throne.
Kensington Palace said the “historic nature” of the tour was “important”.
The trip comes as Israel celebrates the 70th anniversary of its foundation, and amid a rise in tensions between Palestinians and Israelis.
Israeli forces launched air strikes on Palestinian militant positions in the Gaza Strip on Wednesday after rockets and mortars were fired into Israel.
During his visit to Israel, the Duke of Cambridge will visit the World Holocaust Remembrance Centre and lay a wreath to commemorate those who died during the Second World War.
He is expected to visit Jerusalem’s Old City and the grave of Princess Alice of Greece, his great-grandmother and the Duke of Edinburgh’s mother.
‘The prince wanders among the bones of Empire’
By Jonny Dymond, royal correspondent
The Duke of Cambridge is embarking upon an historic tour of the Middle East – visiting both Israel and the Palestinian territories – in a trip in which ironies and sensitivities will abound.
The Royal Family is keenly aware of its own history. Prince William is this week visiting a region that rarely forgets its past.
When Palestine slipped from the hands of an exhausted and broken post-war Britain in 1948, the Prince’s great-grandfather George VI was on the throne.
Read more from Jonny Dymond here.
Prince Phillip visited the grave in 1994 when a ceremony honoured her for saving Greek Jews during the Second World War.
The duke will visit Ramallah in the West Bank, where he will focus on issues facing refugee communities, as well as meeting Mr Abbas.
A Kensington Palace spokesman said: “The historic nature of this tour is of course important and the duke considers it a great privilege to be undertaking the first ever official royal tour of Israel and the Palestinian territories, and to be able to help further strengthen the friendship between Jordan and the United Kingdom.”
Turkish voters are set to decide whether to grant President Recep Tayyip Erdogan a second five-year term in the most fiercely-fought elections the country has seen in years.
Polls open at 08:00 (05:00 GMT) in presidential and parliamentary votes.
If Mr Erdogan wins, he will adopt major new powers that critics say will weaken democratic rule.
But he faces a major challenge from centre-left candidate Muharrem Ince of the Republican People’s Party (CHP).
Turkey remains under a state of emergency imposed in the aftermath of a failed coup in July 2016.
These elections were originally scheduled for November 2019 but were brought forward by Mr Erdogan.
What do the candidates say about each other?
Mr Erdogan and his main rival Muharrem Ince both held huge rallies on Saturday, their final day of campaigning – and each branded the other unfit to run Turkey.
Mr Ince, whose fiery campaigning has revitalised Turkey’s demoralised opposition, promised to push back what he characterised as a slide into authoritarian rule under Mr Erdogan.
“If Erdogan wins, your phones will continue to be listened to… Fear will continue to reign,” he told at least a million people gathered in Istanbul. “If Ince wins, the courts will be independent.”
Mr Ince also said that if elected, he would lift Turkey’s state of emergency within 48 hours. Emergency rule allows the government to bypass parliament.
At his own rally, President Erdogan – who was prime minister for 11 years before becoming president in 2014 – used a violent metaphor to summarise his hoped-for result, asking supporters, “Are we going to give them an Ottoman slap [a technique for knocking someone out] tomorrow?”
He accused Mr Ince – a former teacher and MP of 16 years – of lacking the skills to lead.
“It’s one thing to be a physics teacher, it’s another thing to run a country,” Mr Erdogan said. “Being president needs experience.”
He told supporters he planned to push through more major infrastructure projects to boost the economy.
Analysis: Judgement day for Turkey’s powerful president
By Mark Lowen, BBC Turkey Correspondent
Never in its modern history has this crucial country felt so divided. And never has Recep Tayyip Erdogan faced such a tough election fight.
Turkey’s most powerful leader since its founding father Ataturk would become more powerful still if he wins, scrapping the post of prime minister and weakening parliament. But if he fails to reach 50% in the presidential vote, he’ll face a run-off, probably with Muharrem Ince, a fiery centre-left candidate who has electrified the campaign.
In the parliamentary poll, a united opposition is hoping to deprive Mr Erdogan of his majority. Worshipped by his supporters, abhorred by his critics, this is President Erdogan’s judgement day. Nobody can tell which way it will go.
How will the voting work?
Two votes are being held on Sunday – one to choose Turkey’s next president, and another to pick members of parliament.
Around 60 million Turks are eligible to take part.
Six candidates are vying for the presidency, and if one of them wins more than 50% of the vote they will be elected outright.
If nobody hits that threshold, the top two will face off in a second-round vote on 8 July.
Mr Erdogan will be hoping to win decisively, as a run-off vote could end in defeat or narrow his margin of victory.
In the parliamentary election, the president’s AK Party (AKP) will face a tough battle to keep its majority in the 600-seat assembly.
The contest pits a government-led coalition against an alliance of opposition parties.
What is Turkey like?
The full story: Life under President Erdogan
The performance of the pro-Kurdish Peoples Democratic Party (HDP) could prove decisive. If it hits the 10% vote-share needed to enter parliament, it will be harder for the AKP to retain its dominance.
The HDP’s presidential candidate Selahattin Demirtas is presently detained in a high-security prison on terror charges, which he firmly denies.
What are the main election issues?
The biggest is the economy. The Turkish lira has tanked and inflation stands at around 11% – so ordinary people are feeling the squeeze.
Terrorism is another vexed issue, as Turkey faces attacks from Kurdish militants and the jihadists of the Islamic State group.
However, our correspondent says the country tends to vote along its big divides: One between Kurds and nationalists, and another between religious and secular people.
Will the vote be free and fair?
Polls will open amid high security. In Istanbul alone, more than 38,000 police officers are expected to be on duty.
Fears have been raised about possible voter intimidation, especially in south-eastern areas where Kurdish votes are key to the result.
Electoral fraud is another potential risk, especially as a new law allows ballot papers to be counted even if they do not have the election board’s stamp to mark them as genuine.
Alcohol sales will be banned on Sunday – which is normal for Turkey on polling days.
What happens if Mr Erdogan wins?
He would start his second term in a turbo-charged version of the job.
The presidency was once a largely ceremonial role, but in April 2017, 51% of Turkish voters endorsed a new constitution that grants the president new powers.
Directly appointing top public officials, including ministers and vice-presidents
The power to intervene in the country’s legal system
The power to impose a state of emergency
The job of prime minister will also be scrapped.
Critics have accused Mr Erdogan of trying to usher in one-man rule, and his rival candidates have said they would not bring in the changes.
If both elections go against the current president, Turkey’s political landscape will change significantly.
But if the presidency goes one way and parliament another, it could trigger a period of political instability in the years to come.
The country has gone through a tumultuous period since the 2016 coup attempt. More than 160,000 people have been detained, according to the UN, as part of a crackdown on perceived followers of US-based cleric Fethullah Gulen, whom the government accuses of being behind the plot. He denies any involvement.
Rail services on the East Coast Main Line are back under government control, following the failure of the franchise.
Stagecoach and Virgin Trains, which had a 90% and 10% stake in the venture respectively, handed over control on Sunday after running it since 2015.
The Department for Transport will run the service until a new public-private partnership can be appointed in 2020.
The London to Edinburgh line connects London King’s Cross to stations in the north and Scotland.
The route – which services stations including York, Leeds, Newcastle, Aberdeen and Inverness – will now be known as the London North Eastern Railway (LNER), a name last used in the 1940s.
The first LNER train will be the 07:54 BST departure from Newcastle to London King’s Cross on Sunday.
State takeover for failed rail franchise
The companies promised to pay £3.3bn to run the franchise until 2023, but at the end of last year it had become clear they were running into trouble.
In February it was announced that the franchise would end early, leading to accusations the government was bailing them out.
A history of failure
This is the third time a franchise on the East Coast Main Line has failed.
In 2005, GNER signed a £1.35bn, 10-year deal in what was then the biggest contract in European railway history. One year later it was stripped of the route.
In August 2007, National Express agreed a £1.4bn deal, but then handed it back to the government in 2009 amid the financial crisis.
It was then government-run until Stagecoach and Virgin’s £3.3bn bid in 2015.
Read more: What went wrong at the East Coast Main Line?
Last month, Transport Secretary Chris Grayling said the franchise had failed because Stagecoach and Virgin Trains had “got their bid wrong”, overestimating the profitability of the line.
He told the House of Commons that Stagecoach and Virgin had lost almost £200m, but there had not been a loss to taxpayers “at this time”.
Mr Grayling has also rejected accusations from Labour and trade unions that his decision to end the deal early was a “bailout” worth £2bn.
“Stagecoach will be held to all of its contractual obligations in full,” he said.
The rail companies blamed their problems on Network Rail, saying it had failed to upgrade the line which would have allowed them to run more frequent services.
Virgin Trains East Coast (VTEC) managing director David Horne will be in the same role at LNER and all VTEC staff will transfer to the new franchise.
The switch to the new brand is costing an estimated £8m in terms of marketing and rebranding.
A report from VTEC said the route had experienced a 5% growth in passenger numbers in recent months, building on the 21.8 million journeys taken in 2017/18, up 1.3 million from when the franchise began.
Stagecoach chief executive Martin Griffiths said the company’s staff could be “fiercely proud of everything they’ve achieved”.
“The growth we’re now seeing proves our initiatives are paying off and the railway we hand over to LNER is not only better than we inherited, but one that has been positively transformed for customers,” he said.
Theresa May must prepare to exit the EU with no deal to have “real leverage” in Brexit negotiations, a letter from 60 politicians and business figures says.
The prime minister should also reserve the right to “take with it the £39bn it has offered to pay as part of a divorce settlement”, it says.
Signatories urge the government to accelerate plans to operate under World Trade Organisation (WTO) rules.
Downing Street said it was confident the UK would get a good deal.
Former cabinet ministers, economists and business figures including former chancellor Nigel Lawson, vocal Brexiteer John Redwood, and Wetherspoon chairman Tim Martin signed the letter.
It was organised by Economists for Free Trade (EFT) and asks Mrs May to warn the EU that despite its “intransigent and punitive stance” Brexit cannot be stopped.
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Your guide to Brexit jargon
“We believe you could also make clear that your preferred outcome is a free trade deal between Britain and the EU, an arrangement that is to the mutual benefit of both parties,” the letter says.
It goes on to say that even though a free deal trade is “eminently possible”, it believed it was “time” to move to a World Trade Deal under WTO rules “in light of the reluctance of the EU swiftly to secure a free trade deal”.
Britain is due to leave on 29 March 2019, 46 years after it first joined the European Economic Community, the forerunner to the EU.
BBC political correspondent Ben Wright says the letter is “a sign of how frustrated hardline Brexiteers are becoming”.
He adds: “The letter shows how intense the pressure is for Mrs May not to compromise, from some in her own party.”
What would WTO rules mean?
The UK wants to negotiate a “comprehensive, bold and ambitious” free trade agreement with the EU.
If it can’t achieve that, there are a number of other possible arrangements of varying depth before the UK reaches the point where it has no preferential trade relationship with the EU other than common membership of the WTO.
If the UK had to trade under WTO rules, tariffs – a tax on traded goods – would be applied to all UK exports.
The average WTO tariff varies from product to product, from 0% on mineral fuels and pharmaceuticals, to around 20-35% on processed food and 45-50% on meat.
Reality Check: Does the UK trade with ‘the rest of world’ on WTO rules?
The warning from well-known Brexit supporters comes after tens of thousands of people marched in central London, demanding a final vote on any UK exit deal..
On Friday, plane-maker Airbus – which employs 14,000 people in Britain – said it could leave the UK if it exits the single market and customs union with no transition deal.
Car maker BMW also warned that clarity is needed on a trade deal by the end of the summer, potentially affecting the company’s 8,000-strong staff in the UK.
In the letter, EFT says Britain can “flourish, even without a free trade deal, because of benefits of leaving the EU”.
“This would give the chancellor ample scope to increase spending on priority public services such as the NHS, while reducing the too high UK tax burden.”
Earlier this week, Theresa May said a so-called Brexit dividend could be used to fund part of an extra £20bn a year for the health service.
Although the Office for Budget Responsibility (OBR) calculates the UK will begin saving £3bn a year by 2020, this does not take into account Britain’s expected £39bn divorce bill for exiting the EU.
When asked about the EFT’s letter, a Downing Street source said: “We are confident of getting a good deal that delivers for every part of the UK and allows us to take back control of our money, rules and borders.”
A former CIA software engineer has been charged with leaking a stolen archive of the spy agency’s secrets in 2017.
Joshua Adam Schulte allegedly stole classified information relating to national security from the CIA to be transmitted to Wikileaks.
FBI agents discovered alleged child porn in Mr Schulte’s apartment after his arrest.
Mr Schulte faces 13 separate charges and could face up to 135 years in prison if found guilty.
Using information allegedly provided by Mr Schulte, Wikileaks published thousands of documents in March 2017 detailing the CIA’s cyber-warfare programme.
Mr Schulte designed malware used to break into terrorism suspects’ and other targets’ computers for the CIA for six years. He quit the spy agency in 2016 to work in the private sector.
Codenamed Vault 7, the 2017 breach told how the CIA can take over iPhones through malware and turn smart TVs into surveillance devices.
It is believed to be the agency’s largest leak of classified documents.
“Schulte utterly betrayed this nation and downright violated his victims. As an employee of the CIA, Schulte took an oath to protect this country, but he blatantly endangered it by the transmission of Classified Information.” FBI official William Sweeney Jr. said in a statement.
Wikileaks shared a statement from Mr Schulte regarding his arrest by the FBI, in which the software engineer said “the agents lead [him] around like a prized dog”.
Boy bands are all about momentum. Like whale sharks, they’ve got to keep moving or they die – constantly recording and touring to stay at the forefront of fans’ minds.
So it was uncommonly brave of 5 Seconds of Summer to take two years off to work out where their future lay.
The Australian quartet ended up reconvening in Sweden, where they buffed their songwriting muscles with the likes of Rami Yacoub (Britney, Madonna), Carl Falk (Ariana Grande) and Julia Michaels (Justin Bieber).
“The Swedish style of songwriting is so mathematical,” says 5SOS singer Luke Hemmings.
“I remember Rami counting the syllables in our lyrics. He was tapping his fingers on the desk like, ‘No, no! The syllables don’t match up!'”
The scientific approach eventually produced Youngblood – a bright, shiny pop record that retains the band’s early, punkish ethos.
And, proving that boy bands don’t need to be worked into an early grave, it’s just entered the UK charts at number three, above the new album by Beyonce and Jay-Z.
Using the album’s song titles as inspiration, we put a series of random but revealing questions to Hemmings and bandmate Michael Clifford.
Track one: Youngblood
You’ve called this the “first album we recorded as adults”. When did you first feel like a proper grown up?
Luke: It’s hard to explain because we have to do serious, adult things – we run a business and people work for us – but we’re still like kids. I just bought a Nintendo Switch!
Michael: I think we looked at songwriting in a more adult way this time. When you’re young, you write off instinct and you sponge off other artists. Once you get to adulthood, you start to come up with different ideas.
Luke: Yeah, our second album is very much, ‘We’re a band and we’re going to play… so screw you!’ On this one, we only added guitar parts and harmonies when they were needed.
Track two: Want You Back
Which musician would you bring back from the dead, if you could?
Luke: Michael Jackson, for sure. If he’d stayed alive, pop would be a completely different realm. I would have loved to hear his take on where music was headed.
Track three: Lie To Me
What’s the last lie you told?
Michael: “Thanks for that great interview.” To the guy before you.
Track four: Valentine
Do you have an embarrassing Valentine story?
Luke: I’ve got one that happened to me this year. Usually my girlfriend is the one who’ll book hotels and stuff, but I found this place in Malibu – beachfront house, amazing views, awesome sunset and I’m like, “Hell, yeah!”
But we got there and it literally looks like the 1960s. Not in a good, Mad Men way. It’s raining, it’s depressing, the tide is all the way up to the door. The beach is just rocks. It was pretty embarrassing.
Michael: That wasn’t much of a sad story. You’re still on a beachfront house in a Malibu.
Luke: But the house sucked!
Track five: Talk Fast
How does counting syllables improve your lyrics?
Michael: Well, it’s little things. So if the verse is quickfire, da-da-da-da-da, the bridge will be quite elongated and legato [smooth, with no breaks between notes]. On Talk Fast in particular, the melody follows the guitar riff – it’s very like The Police.
Track seven: If Walls Could Talk
Do you have to build walls around 5SOS to protect your sanity?
Luke: I wouldn’t say it’s just particularly with us. I’d say it’s with any artist. When you’re driven to your absolute limit, working 14 hours for 14 days straight, you have to know what you want, and not listen to all this other crap outside.
Michael: That said, if you’re closed off all the time you’ll have a pretty unhappy life. There are times when you have to open up.
Track nine: More
This song has seven writers. How many is too many?
Michael: Seven writers? Who is on there? I can’t remember.
Luke: The thing is, all the lyrics come from us. That song’s about being at home with your significant other and feeling like you’re not understanding each other at all. It’s like, “We have this sanctuary of a home, separate from the outside noise of the band and our careers – and it’s like we’re speaking in different tongues.”
Track 10: Why Won’t You Love Me?
What’s the strangest thing a fan’s done to get your attention?
Luke: The weirdest ones are adoption papers… people ask us to sign those. You can never really tell if they’re real.
Michael: Someone bought us a star in the sky once.
Luke: But then we looked it up and apparently you can buy a star for 16 cents.
Track 12: Empty Wallets
How much cash do you have on you right now?
Luke: Zero dollars.
Michael: I don’t have my wallet on me – but there’s some Russian money that’s been in there for months.
Luke: That’s kind of sketchy… But I don’t use cash except in America, because it’s got such a culture of tipping.
Michael: No-one’s doing something for free there.
Track 14: Monster Among Men
What’s your biggest demon?
Michael: Without getting too deep, I’d say it’s over-thinking and over-analysing every part of my life.
Luke: I’m going to say chocolate.
Michael: Oh damn, I could have said something like that! Can I change my answer to cheese?
Track 15: Meet Me There
What’s the best location for a first date?
Luke: I like dinner.
Michael: He’s pretty norm. I’m going to say laser tag.
Track 16: Babylon
Babylon was one of the first civilisations to write down a complete legal code. If you could enact a law today, what would it be?
Luke: I would ban guns in the States. It’s just such an epidemic that’s been happening for so long.
I think if there was less violence in the US, some of the terrible things that have taken place overseas might not have happened. I know that’s hopeful and maybe naïve, but that’s what I think.
Youngblood is out now.
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It draws in poverty, the public good, individual freedoms, a fear of a nanny state, and is part of what is said to be a £27bn problem for UK PLC.
But the policy launch to stop youngsters putting on so much weight – the second in less than two years – is part of a new effort by the government to engage voters on domestic issues that deeply affect their lives.
Last week it was NHS funding, this week it’s family health; both are issues that most of us care about and which touch us on an emotional level.
And if that sounds like something out of a textbook on connecting with voters, that’s because it is: specifically ‘The New Working Class: how to win hearts, minds and votes’ by Claire Ainsley from progressive think-tank the Joseph Rowntree Foundation.
Her book amplifies research by right-of-centre think-tank Policy Exchange which identifies family, fairness, hard work and decency as the four key themes that voters in marginal seats say best describe their own values.
Ainsley extrapolates this to the majority of voters – the low and middle income voters she calls the new working class – and argues that pushing those four buttons on issues that people care about can create a new politics that will engage and motivate people to vote.
If this all seems a bit esoteric, here are some word searches: “fair/fairness/fairer” appeared in Theresa May’s speech launching her NHS funding pledge a week ago five times; “family” appears seven times in Jeremy Hunt’s press release launching the (second) obesity policy, and there are 12 mentions of “parent”. And who can say how many times they’ve heard the phrase “hard working families”?
Family, fairness, hard work and decency are the magic words that can trigger an emotional response and engage us to support a well-argued policy.
You might not have heard it here first, but you can be sure you will hear those words again. And again.
New Zealand’s prime minister has named her baby daughter Neve Te Aroha Ardern Gayford, as she and partner Clarke Gayford left hospital.
Ms Ardern said the couple had struggled for months to decide on a name but had decided to wait until their baby was born to see which one suited her.
She said Neve meant bright, radiant and snow.
“We chose Neve because we just liked it, and when we met her we thought she looked like she suited the name.
“Te Aroha was our way of reflecting the amount of love this baby has been shown even before she even arrived… it’s also the place where all my family are from and I grew up under that mountain.”
Aroha means “love” in Maori, while Mt Te Aroha is a 952-metre mountain in the Kaimai Range, on New Zealand’s North Island.
The “Ardern” would serve as another middle name, meaning the baby is known as “Neve Gayford”, she added.
Mr Gayford said that the birth had been “all a bit of a blur… for both of us”, but added: “I won’t forget the look on Jacinda’s face when she finally held the baby… she looked absolutely just stunned and very, very happy.”
Little Neve was born on Thursday afternoon New Zealand time, weighing 7.3lb, but the prime minister was kept in hospital for three days mainly due to security arrangements.
On Sunday, the little baby made her first public appearance at Auckland City Hospital, appearing to sleep soundly as her parents answered a few questions for waiting reporters.
Ms Ardern, who described herself as doing well but being “sleep-deprived”, plans to take six weeks off work before Mr Gayford takes on the bulk of the parenting duties.
The 37-year-old, who is only the second elected world leader to give birth while in office, said her partner was “being as much of a role model as I am”.
She added: “I hope for little girls and boys that there’s a future where they can make choices about how they raise their family and what kind of career they have that are based on what they want and what makes them happy. Simple.”
The baby was welcomed with congratulatory messages from world leaders and royals, including form the Queen and the Duke and Duchess of Sussex, something Ms Ardern described as “mindblowing”. The royal couple will visit New Zealand as part of a tour later this year.
Other gifts included a bouquet of flowers form the Saudi Embassy that was so large that it would not fit into the room and was moved to the ward to be shared with other new mothers.
But Ms Ardern added that she also treasured the messages from “those people who took time to send a little note, or a blanket, or a set of booties”.
Mr Gayford, known in New Zealand as the “first bloke”, is the presenter of a fishing show, and Ms Ardern was the youngest New Zealand PM in 150 years, but she said they would not put pressure on their new baby.
“We’re not placing any great expectations on this baby – except happiness and love,” she said.