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Swindon family of girl with rare disease 'horrified' at latest trial update
Swindon family of girl with rare disease 'horrified' at latest trial update

Yahoo

time7 days ago

  • General
  • Yahoo

Swindon family of girl with rare disease 'horrified' at latest trial update

The Swindon family of a young girl with a rare brain disease welcomed the news that her trial of lifesaving treatment will continue indefinitely. Addy Clarke is just one of 100 children in the world to be diagnosed with Batten Disease (CLN2), which is gradually taking away her ability to talk, eat and walk independently, and see. Her parents Hayley and Dave have previously spoken to the Adver about their heartbreak at seeing their daughter fade before their eyes while she is supported by vital cerliponase alfa treatments. Earlier this month, they celebrated NICE and the NHS coming to a commercial agreement to continue that treatment for Addy and all other children with CLN2 after the trial ends in 2025, describing the news as 'amazing'. But they were saddened to learn that the same access to the treatment would not be given to any child diagnosed after January 1, 2026. Recommended reading Building 700 homes at old golf course 'best option' for the area Family pays tribute to cyclist killed in collision by Wiltshire driver Wedding venue can continue to host events after planning appeal NICE explained that although its committee took into account the condition's rarity, severity and the effect of the treatment on quality and length of life, the most likely cost-effective estimate based on the proposed price of the medicine is not within what it considers to be an acceptable use of NHS resources. In a statement on Addy's Batten Adventure Facebook page, the Clarke family said: 'Whilst we are happy for our own little Addy, we sadly know firsthand the devastation that this news can cause on a family - which would be made all the worse if you knew other children in the country were on the same treatment that your child couldn't access because of the timing they were diagnosed, and cost. 'For us, this treatment has never been simply just about our Addy, but all children diagnosed with this earth-shattering disease - therefore we will fight on. 'The decisions by NICE have been horrific and it feels like they are trying to manipulate the pharmaceutical companies by using families as pawns in game. 'Thank you for all your support you have shown us through the ongoing questions, the donations, prayers, meals and many other things over the past five years of this journey. 'We take a big deep breath, gather our thoughts and go again.' The family has met with South Swindon MP Heidi Alexander as they try to raise awareness of this disparity in the treatment of children with the rare disease. As for Addy herself, she recently celebrated her ninth birthday by having a party with her friends and classmates at Swindon's hydrotherapy pool.

Update as more details revealed about aftermath of dog attack
Update as more details revealed about aftermath of dog attack

Yahoo

time29-04-2025

  • Yahoo

Update as more details revealed about aftermath of dog attack

More details have been revealed about the aftermath of a reported dog attack near Swindon's town centre. Armed officers, more than a dozen police cars, a land ambulance, and the Bath and Wiltshire Air Ambulance attended Exeter Street on Sunday afternoon to deal with the incident. Wiltshire Police confirmed to the Adver that a man in his 50s was injured in the alleged dog attack and suffered injuries that were described as life-changing. He was taken by helicopter to Bristol's Southmead hospital for treatment. Police have since confirmed that the injuries he has received are not thought to be life-threatening. The spokesperson added that although the county force has not yet formally assessed the breed of the dog, the owner had self-declared it to be an XL Bully. Policeman fired after pub incident's "actions were not acceptable" says chief Arrest after suspect "repeatedly exposes himself" in car park Two arrested on suspicion of drug dealing as £10,000 and drugs seized The 24-year-old woman who owns the dog and was arrested at the scene on suspicion of has since been released on bail while officers' enquiries continue. Eyewitnesses who were in the street at the time described hearing her pleading with firearms officers to 'not shoot her dog'. It is further understood from accounts of neighbours that the victim was not a stranger to the dog, and had often been seen walking the pet around the area. He is believed to have been looking after the dog for its owner at the time of the incident. Police dog handlers and officers were able to sedate the dog without the need for further deadly intervention and are currently caring for it in police kennels. Officers have confirmed there is not thought to be a further threat to the public. An Advertiser investigation into the cost to police of managing the new laws surrounding the ownership of XL Bullys revealed that it had risen exponentially in the last year. We submitted an FOI request to the force to find out how many dangerous dogs had been seized in the last five years and how much it had cost Wiltshire Police to house these dogs in kennels after the law changed regarding XL Bully ownership in February 2024. In 2024, there were 72 dogs seized, nearly five times as many as the 15 seized in 2020. During the intervening period, there were 26 dogs seized in 2021, 23 in 2022 and 29 in 2023. As of February, the costs to date for the current year stood at £266,280, up massively from £33,437 in the period from 2020 to 2021. From 2023 to 2024, when the law changed, Wiltshire Police spent £84,504 on kennel costs for dangerous dogs. (Image: From public) A Wiltshire Police spokesperson said: "The cost of kennelling dangerous dogs has risen significantly in the past year due to increased fees combined with the fact we are seizing far more dogs since the law around XL bullies changed. "This has resulted in a much higher workload for officers in our Dog Section, who have swiftly adapted and work hard to keep Wiltshire safe. "It is important to remember that at the heart of this subject are human victims - some of whom have suffered life-altering injuries from dangerous dogs. "We will continue to enforce the law and seize banned breeds and any breed of dog which is suspected to be dangerously out of control. "For more information about this subject, please visit the website." Police are appealing for witnesses for this incident, and anyone who saw what happened or has information that could help with the police's investigation is encouraged to call 101 quoting reference number 54250050707.

Simone Biles on ice: Ilia Malinin shows his only rival is perfection itself
Simone Biles on ice: Ilia Malinin shows his only rival is perfection itself

Yahoo

time30-03-2025

  • Sport
  • Yahoo

Simone Biles on ice: Ilia Malinin shows his only rival is perfection itself

Ilia Malinin looks on after winning his second straight world title on Saturday at the world figure skating championships at Boston's TD Center. Photograph: Joosep Martinson/InternationalIlia Malinin had just finished defending his world title with another sensational performance including six quadruple jumps beneath the lights of a nearly sold-out TD Garden. But as he pounded the ice after his final pose, the gesture wasn't pure triumph like last year in Montreal. It was the frustration of a perfectionist falling short of a standard no one else is asking him to meet. Advertisement 'That was definitely because I didn't land all seven,' the 20-year-old American said afterward. 'It's still the one thing I want to accomplish – whether before the Olympics or sometime in my career – just to land them all and really maximize my technical ability, while also incorporating the rest of the program.' He had come close. Malinin opened with a clean quad flip, then landed the mythical quad Axel – the dangerous four-and-a-half-revolution jump no other skater in history has landed in competition – though it was marked a quarter under-rotated. But midway through the program, his quad Lutz unraveled into a double, leaving his long-chased 'perfect layout' just out of reach once again. Related: Unstoppable Malinin repeats as world champion with six quadruple jumps Yet still, the win was emphatic. Malinin's 318.56-point total left him 31 clear of silver medallist Mikhail Shaidorov and nearly 40 ahead of Yuma Kagiyama, whose error-strewn skate effectively handed Malinin gold before he'd even taken the ice. The outcome was never in doubt. Only perfection was. Advertisement The difficulty of Malinin's technical ceiling is so far above the rest of the field that he can essentially win on difficulty, with enough margin for error to absorb all but the most catastrophic mistakes and still dominate. Call him Simone Biles on ice. The only real drama lies in his own ambition. 'There wasn't even a single thought about doing an easier program,' Malinin said. 'My main goal was to go for this layout. I really trained at home to make sure everything was effortless, comfortable, and consistent. I just wanted to come here and try it – to see what would happen.' The program he attempted included all six recognized quads in addition to the quad Axel, a configuration beyond the reach of his most ambitious rivals. He refers to it now as the 'perfect layout', a goal he's been chasing for months, even as he's remained unbeaten since 2023. He first went for it at the Grand Prix final in December, where he landed seven quads but several were under-rotated. He tried again at the US championships in January, falling on one and popping another. Both times, he won easily. Both times, he left unsatisfied. 'I think until I land all of them I wouldn't want to cut back,' he said. 'The seven-quad layout is really my ideal layout, and I want to nail this and have it be comfortable, effortless.' Advertisement After those misses, he returned to his home rink in Reston, Virginia, and drilled the layout relentlessly. Scaling back was never on the table. Even after Kagiyama faltered in Boston and gold felt assured, Malinin didn't consider dialing back for competitive reasons. That's just not how he's wired. 'I didn't really think about anyone else's scores,' he said. 'I just wanted to skate how I wanted to skate. I felt bad for Yuma, honestly – he put in the work. But I had to focus on my own plan.' That plan has always been about pushing limits. Since landing the first quad Axel two years ago, Malinin has treated figure skating's most daunting elements like a checklist. Six quads. Then seven. All while refining his transitions, his musicality, his performance – the artistry that once lagged behind the jumps but now rises alongside them. It seems like it won't be long before a quintuple is on the table. But on Saturday night, it wasn't the quad Axel that gave him the most satisfaction. It was the quad loop, a jump that had plagued him all season. 'That whole season was for that loop,' he said, laughing. 'I was ready to throw hands with that loop. Finally landing it gave me more happiness than not having a perfect program. That was the moment that made me smile.' Malinin is, in many ways, inventing challenges for himself. With victory nearly assured, he's turned the test inward, building obstacles only he can clear. His closest rivals speak of him with a mix of awe and resignation. 'I'm starting to think he's invincible,' Kagiyama said earlier in the week. Even the popular and well-liked American Jason Brown, known for his own exquisite programs, remarked: 'What I think is most incredible is I feel he has more in him.' Advertisement That hunger, though, hasn't just been physical. 'I'm definitely impressed with how I feel on the ice, and how I feel inside,' Malinin said. 'My confidence, the way I approach competitions mentally – it's really changed. Now I'm able to get into that flow state and just be in the game.' He talks often about muscle memory: about trusting the work, surrendering to instinct when the music starts. 'I don't feel like I have to force anything anymore,' he said. 'That's what helped me get through today.' Now with the Olympic season on the horizon and Milano Cortina only 10 months down the road, the spotlight will only grow. After claiming three of the four gold medals on offer at a world championships for the first time ever – Malinin, Alysa Liu and the ice dance team of Madison Chock and Evan Bates – the United States will head to Milan as clear favorites in the team event. 'I'm definitely looking forward to it,' Malinin said. 'It's a different type of energy. When you skate solo, you're focused just on yourself. But having that team to support you and be there in the moment that's really special. I think it'll be fun.' Advertisement For now, the summer offers a brief reset. Extra brief for Malinin, who is back to work on Wednesday when he flies to skating-mad Japan for an exhibition. 'The first half of the summer I'll spend doing shows and I think that's really important,' he said. 'There's not the pressure of competition. I can enjoy performing, be more present with the audience, and just have fun out there.' Then the building begins again: new programs, new strategies – and the same goal he's chased all year. 'My focus on the Olympics will really start next season,' he said. 'That's when I'll look at what I want to do, how the jumps are going, how everything feels. It'll be a whole game plan.'

Traffic light smashed in crash near busy roundabout
Traffic light smashed in crash near busy roundabout

Yahoo

time24-03-2025

  • Automotive
  • Yahoo

Traffic light smashed in crash near busy roundabout

A traffic light was smashed during a crash on a busy Swindon road. A silver VW Passat appeared to have crashed into a traffic light at the crossing on County Road, near the Transfer Bridges Roundabout on Friday, March 21. Nobody is believed to have been seriously injured during the incident however a traffic light was badly damaged. READ MORE: Man won't return to Swindon gym after Ugg boots dispute Flash Sale Alert!🌟Unlock unlimited local news subscribe today and save 40% off an annual subscription. Enjoy access to our ad-free mobile and tablet app, as well as the digital edition of the paper. Don't miss out – subscribe now!👉 — Swindon Advertiser (@swindonadver) March 20, 2025 One eyewitness who was at the scene told the Adver: 'There was a minor road traffic collision at County Road when a Silver VW Passat collided into a traffic light. 'Few witnessed the collision and some people weren't helpful, saying 'can't park there' after the collision. 'There were no police attending the accident, a woman in her 20s wasn't hurt. 'But the traffic light was damaged but still working. You can still access the button on the other side.'

An uncompromising ‘Hedda Gabler' at Apollinaire
An uncompromising ‘Hedda Gabler' at Apollinaire

Boston Globe

time04-03-2025

  • Entertainment
  • Boston Globe

An uncompromising ‘Hedda Gabler' at Apollinaire

In that, she has much in common with most other women in the late 19th century. But Hedda is not most other women, and Advertisement That approach gives an actor a lot of interpretive running room, and Jennings makes the most of that license. She doesn't attempt to soften Hedda' s hard edges. The default expression of this Hedda is a sneer; when in conversation, she doesn't so much speak words as bite them off. Yet though Jennings's Hedda does not seek the audience's sympathy, she nonetheless receives a portion of it. This is partly because the performance by Jennings is so compelling; partly because we in the audience are aware of what women have had to fight for and against in all times and places; and partly, perhaps, because we believe Hedda when she says, in a moment of bleak self-awareness, 'I have no talent for life.' A decade before 'Hedda Gabler,' Ibsen had written 'A Doll's House,' also about a woman who takes drastic action to escape the suffocating life she finds herself in. It's a testament to Ibsen's greatness that he managed to make both plays utterly distinctive, for all their surface similarity. Both plays have something to say to present-day audiences; just two years ago Jessica Chastain starred in As 'Hedda Gabler' begins, Hedda is newly wed, to George Tesman (Conall Sahler), and none too happy about it. George is an ebullient and well-meaning but somewhat obtuse academic. Sahler gives a fine performance overall, but in his first scene on Sunday he nearly shouted his lines, making it seem like he was acting in a different play altogether. (The effect was intensified because his entrance followed a scene with Paola Ferrer, as George's aunt Julianna, that went too far in the other direction, its starchy formality teetering on the verge of stiffness.) Sahler lowered the volume as the performance went on. Advertisement The daughter of a general, and thus accustomed to the finer things, Hedda is starting to realize that she married a mediocrity, and is chafing — seething, actually — at the thought that her fate is to live in reduced circumstances. Making matters worse is the fact that her erstwhile lover Eilert Lovborg (an elegant Joshua Lee Robinson) has written an acclaimed best-seller described as 'a cultural history of the march of civilization,' and is working on a follow-up book — achievements that might bring Lovborg the university professorship that George is hoping for. To Hedda's unhappiness is added jealousy when she learns that Thea Elvsted (Kimberly Blaise MacCormack), a former schoolmate whom she used to torment, is assisting Lovborg with research and has forged a close relationship with him. But Lovborg is an alcoholic who has had a precarious hold on sobriety for two years — and that precariousness turns out to matter a great deal. Then there's the outwardly amiable but opportunistic and ultimately predatory Judge Brack ( qui vive for a way he can manipulate the situation to his advantage and outmaneuver Hedda. Advertisement Judge Brack (Cristhian Mancinas-García), Eilert Lovborg (Joshua Lee Robinson), and George Tesman (Conall Sahler). Danielle Fauteux Jacques The sexual dynamics are more overt than usual in this staging of 'Hedda Gabler.' This Brack knows Hedda can't push back against his overtures, and takes full advantage when they're alone to make physical contact, fondling her a couple of times. At one point, he menacingly closes in behind her when the two of them are behind a piano, sending the chilling message that he now has her in his complete power. It works, because Jacques knows where to draw the line at updating the nonverbal action, never letting it stray into sensationalism. Apollinaire's performance space at Chelsea Theatre Works is a very small one. For performers and audience alike, there's no place to hide. (When they're not in a scene, cast members sit on chairs on either side of the stage.) That intimacy lends a visceral force to the proceedings in 'Hedda Gabler,' including one of the most famous gunshots in theater history. Like many fringe theater companies, Apollinaire is a DIY operation all the way. Before Sunday's matinee, Jacques was working the ticket counter, along with actor-director Brooks Reeves, an Apollinaire regular. Then, in the moments before the performance began, with the stage shrouded in semi-darkness, Jacques stood in a hallway to the right of the audience, watching closely as members of the cast moved parts of the set – furniture, bouquets of flowers – into position. Only after every set piece was in place did Jacques turn and walk back up the hallway. (The handsome set was designed by Joseph Lark-Riley, who also handled the sound design. The period-perfect costume design is by Elizabeth Rocha.) Advertisement After the performance and the curtain call, the cast walked up that same hallway, single file. As they were about to disappear from view, Jennings audibly exhaled — a very different sound from that roar near the start of the play. Perhaps it reflected the actor's relief that she could finally relax after a draining hour and 45 minutes onstage. Or perhaps it was an expression of satisfaction at a job well done. If the former, she was certainly entitled. If the latter, it was certainly justified. HEDDA GABLER Play by Henrik Ibsen. Adapted by the company from the translation by Edmund Gosse and William Archer. Directed by Danielle Fauteux Jacques. Presented by Apollinaire Theatre Company at Chelsea Theatre Works, Chelsea. Through March 16. Tickets $25-$65. 617-887-2336, Don Aucoin can be reached at

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