Latest news with #MNDAssociation
Yahoo
a day ago
- Entertainment
- Yahoo
Film night in Warrington to raise awareness of motor neurone disease
A FREE film night is being hosted by the South Lancashire Branch of the MND Association to raise awareness of motor neurone disease (MND). The event will showcase the 2023 musical fantasy film Wonka and aims to bring the community together to increase understanding of the progressive neurological condition. The awareness evening will take place in the Generator at The Engine Rooms at Birchwood Park, Warrington, at 6pm on Wednesday, June 18. Guests will be offered complimentary drinks and cinema snacks, and there will also be free parking for attendees. Later on, several buildings in Birchwood Park will be illuminated in blue and orange as part of the MND Association's Illuminated Buildings campaign, which takes place on Global MND Awareness Day, Friday, June 21. It is necessary to register for free tickets at for catering and venue arrangements. For additional details about motor neurone disease and the MND Association's activities and projects, visit
BBC News
2 days ago
- Entertainment
- BBC News
Bristol in Pictures: Animal magic and Bears' heartbreak
It was not to be for Bristol Bears at Bath on Friday night, but the many supporters who made the short journey to the Rec could look back on some incredible matches this show War Horse has cantered into the Hippodrome just as another big production finishes at Bristol Old legends from years gone by gathered at Downend on Friday for a special match to raise funds for a Gloucestershire legend, and some enterprising lads from Keynsham have been preparing for a motorsport is our snapshot of life in Bristol over the past few days. Pride in defeat: After their defeat to Bath on Friday, there was a moment for the Bristol Bears players to pause and reflect on a great season, with Knowle West boy Ellis Genge giving the speech. Cooling off: With hibernation a distant memory, the European brown bears at Bristol Zoo Project can often be found taking a dip as the summer warms up. Mount Up: Highly-acclaimed play War Horse has arrived at the Hippodrome, and will be galloping across the stage until 21 June. Local legend: A celebrity match took place at Downend CC on Friday in aid of the MND Association and former Gloucestershire cricketer David "Syd" Lawrence. The game, which attracted names such as West Indies legend Courtney Walsh and England fast bowler Devon Malcolm and was watched by an audience of hundreds, also hosted the launch for Syd's new book. Thought provoking: Described by one critic as a "masterpiece", The Beautiful Future is Coming has been enthralling Bristol Old Vic audiences over the past three weeks. African rhythms: Project Zulu Choir's tour of Bristol and Bath came to an end with a concert at Bristol Beacon on Thursday. The tour, in association with UWE, raises funds for school projects back in South Africa. Covering the miles: Volunteers raised money for charities Hope Against Suicide and 1625 Independent People by taking on the challenge of using gym equipment to cover the distance from Bristol to Land's End on Friday. On the up: From struggling to put out a team before the Covid-19 pandemic, hard work by club members and volunteers has led to Kingswood RFC fielding multiple sides and holding events such as walking rugby (above). Plugged in: Lord Lieutenant of Bristol Peaches Golding was one of the first people to get a close look at a new fleet of electric buses that will be serving the city and also Weston-super-Mare. Rosy future: A florist who fled war-torn Ukraine has held her first workshop in her new business. Flowers by Alla, on the Wells Road in Totterdown, is run by Alla Orekhovska, who had to leave her home three years ago after Russian forces invaded. Get your motors running: A group of 10 teenage boys from Keynsham are revving up for a national karting final this month. The group, from Wellsway, Broadlands and Sir Bernard Lovell Schools, built the kart themselves and will be going up against other schools from across the country on Saturday.
Evening Standard
15-05-2025
- Health
- Evening Standard
Omaze launches £4million West Sussex beach house prize draw backed by Eddie Redmayne
Eddie said: "Ten years ago I became patron of the MND Association having learnt about the devastation of motor neurone disease while researching and filming the Theory of Everything. I was struck by the brutality of MND, and how it robs so many people of a future with their families in the cruellest of ways. Every day in the UK, six people are diagnosed with MND and six people die from it.
Yahoo
10-05-2025
- Health
- Yahoo
Man with MND to tackle half marathon in powerchair
A man who was diagnosed with motor neurone disease (MND) is to take part in the Leeds Half Marathon in his powerchair to raise money for research into the condition. The event takes place alongside the Rob Burrow Leeds Marathon, which was launched in honour of the rugby league legend who died last June aged 41 after being diagnosed with MND. Ken Blackburn, from York, said he was looking forward to participating in the race and although his powerchair can reach speeds of up to 8mph (12kmh), he would be taking it at a much steadier pace during the event on Sunday. "I'm looking forward to entering the stadium at the end and crossing the finish line with my wife, Kay," he said. Mr Blackburn's wife and son plan to run the event with him after the MND Association - a partner charity for the marathon - helped him apply for a place to participate in his powerchair. "I'm really looking forward to taking part. As a runner in my previous life, I miss the atmosphere when you take part in an event," he said. The former banker turned taxi driver was diagnosed with MND in 2020, although he said he had been experiencing symptoms of the condition for nearly a decade before. He has primary lateral sclerosis (PLS) - a rarer, slower progressing form of the condition - and now uses his all-terrain wheelchair to get around outside. After supporting his family at previous running events, including the 2023 and 2024 Leeds Half Marathon, Mr Blackburn wanted to be directly involved. Mr Blackburn said: "I wanted to get the full experience and at the same time support my wife Kay, in a more meaningful way. "Unfortunately our daughter Jade has had to withdraw due to a knee injury, but she's flying in from Belfast to lend her support." He said he had joined his wife on a training run to test his chair's battery life, which he estimates can last for about 20 miles (32km). His plan for the day is to keep his wife company while his son forges ahead, so he will not be going "flat out" and will let Mrs Blackburn set the pace. The family are raising money for the MND Association and are currently just over halfway to their £1,000 target. Mr Blackburn also fundraises for the organisation through his photography. For the past three years he has produced a calendar of his own images, which has helped to raise £2,500. He described his photography as his way of "giving something back", especially to the charity's York branch support group, which he regularly attends. "I have always had a passion for landscape and wildlife photography. It also gives me the opportunity to get out in nature, which is essential for good mental health," he said. Looking ahead to Sunday's event, Mr Blackburn said: "It feels very special to be taking part with my family. "They have always shown me their love and support, throughout my journey with MND, so it will be great to support them too." Listen to highlights from North Yorkshire on BBC Sounds, catch up with the latest episode of Look North. Road closures planned for Rob Burrow Marathon 'Running first Leeds Marathon without Rob will be hard'
Wales Online
04-05-2025
- Health
- Wales Online
At first he noticed his arm wasn't moving properly. Now he's stranded in hospital
At first he noticed his arm wasn't moving properly. Now he's stranded in hospital Kyle Sieniawski is believed to be the youngest person in the world with his condition and his loving family are now 'in limbo' with him unable to leave hospital and return home Kyle Sieniawski was diagnosed with motor neurone disease in January (Image: Family photo ) Just over a year ago 13-year-old Kyle Sieniawski was like any other boy his age who enjoyed playing with friends and his favourite hobby taekwondo. However in March 2024 Kyle began to experience neurological symptoms which affected his mobility. At first Kyle was experiencing difficulty moving his left arm but since October his condition has "rapidly" deteriorated and he is now unable to walk and has largely been confined to a hospital bed since December 31 last year. In January his family were told the shocking and devastating news that Kyle has motor neurone disease (MND). He is thought to be the youngest person in the UK to be living with the condition. With his condition worsening Kyle has spent much of the last five months looking at the same four walls at Noah's Ark Children's Hospital in Cardiff. His family have been trying to do all they can to get him home but due to their property being inaccessible for wheelchairs and other medical equipment Kyle would need he has remained in hospital. Kyle with his parents Melanie and Mark (Image: Family photo ) Kyle's mum Melanie, dad Mark, and 17-year-old brother Liam are all living between a family room at Noah's Ark and the Ronald McDonald house. They say their situation has highlighted that processes for families like theirs "simply take far too long". Despite Kyle being diagnosed with MND in mid-January the family are yet to receive any disability benefits. Article continues below The family say they have found themselves stuck "in the middle of a gap" in the systems that should be supporting them. They have been left worrying about the wait for benefits and potentially having to sell their Pontypridd home on top of the already-agonising situation of having a seriously-ill child. Despite being stuck in hospital Kyle's aunt Heather Jones said Kyle is "very strong and is still trying to keep a smile on his face". Get the latest Ponty news first by signing up to our newsletter here. His mum Melanie said: "I feel like he has good days and bad days. He is worse since he came in in December. "It's difficult for him especially and us as parents to adapt to the different things he needs. Obviously a year ago he was able-bodied, a perfectly healthy child, and now he's disabled and that's quite difficult – and heartbreaking – to watch." What is MND? According to the MND Association, MND is a disease in which messages from the motor neurones gradually stop reaching the muscles. This leads the muscles to weaken, stiffen, and waste, which can affect how you walk, talk, eat, drink, and breathe. There is no known cure for MND. It usually affects adults over 50. Heather added the "ultimate goal" would be to get Kyle out of the hospital and at home so that he can be in his own environment. "It could boost his mood no end." The current family home has been assessed by the local council who determined that it would not be possible to adapt the property to suit Kyle's needs. Melanie says that it feels like the family are in "limbo" not knowing who they can turn to. She said: "What we found difficult and what we've noticed is that the process for everything is too long. We are still waiting for disability benefits – it takes an awful long time to get anything. The average wait seems to be months and months and other parents we have spoken to at the hospital are having similar issues. "We're all in limbo at the moment but we haven't got the time for the long waits. There needs to be something available almost instantly, especially when it comes to children, even if it's on a temporary basis." Kyle's 17-year-old brother Liam is also living at Ronald McDonald House to be close to him (Image: Family photo ) In order to get Kyle home the family would need to sell and rebuy a house which itself could still need to be adapted. "That's an awfully long process and not something you want to look at when you've got an ill child." Melanie added that there seems to be a complete gap in the system and "something that is missing in the middle" to help families who find themselves in an agonising situation like hers. "You'd think that in times of extreme distress that something could be done to help you find a suitable home that is fit for purpose," she said. Kyle is also stuck at the hospital as the family have been unable to get a mobility vehicle to help them get out and about with Kyle in his wheelchair as they are still waiting to receive disability living allowance. Even when they do receive this they fear that the waiting list to get an adapted car is around six months. If the family were able to access a suitable car the hope is that Kyle would be well enough to go on small trips that would give the family some time away from the hospital environment and provide a sense of some normality. Kyle has been stuck in hospital since December 31 (Image: Family photo ) "It would be nice for the family to be able to take him for some fresh air at the park or to the cinema and brighten him up a bit," Heather said. "At hospital he's stuck with the four walls. With the condition he's not able to move anymore so he's just stuck watching the TV." Melanie said: "It's just an awfully long time for things to happen and I think that it should be highlighted. There's millions of people up and down the country going through it and you don't realise until you come into the hospital how many ill children there are. We all go about our everyday lives, normal lives, and we don't realise what some people have to go through." As well as fighting to try and get Kyle home while it is possible the family are also fighting for more funding to be allocated for MND research so that no other family finds themselves in the "awful situation" they are. They are encouraging people to sign a petition which calls on the UK Government to allocate regular funding to research into the condition. It has already been signed more than 4,000 times. Kyle's family are calling for there to be increased funding for research into MND (Image: Family photo ) "Our main purpose has been spreading awareness of MND and how horrible an illness it is," Melanie said. "The petition aims to get funding into research so that everybody can have access to trials and ensure there is funding for research to sort this disease out once and for all. When you see what it is and how awful it is you know there needs to be a focus on finding a cure for it. "There's lots of different charities trying to do as much as they can but we just want to highlight that research needs to begin right away because there's not really any time to wait. When you get diagnosed you need access to trials or treatment straightaway. "I never would have thought this would have happened to Kyle but it can happen to anyone. If they can get to a point where they can treat it and cure it then nobody else has to suffer again in the future." Melanie, Mark, and the wider family are also grateful for support they have had from the community through a Just Giving page, which you can see here. Donations have supported the family through this incredibly tough time and allowed Melanie and Mark to take time off work in order to spend precious time with Kyle. "The support has been amazing," Melanie said. "The hospital have been really good. It's an awful situation but the staff have made it better where they can. We've had lots of support from family and friends who have brought food or different things to us. "The fundraising has been overwhelming. Complete strangers have given donations – it's been absolutely amazing. We've also noticed a lot of other people who've got the disease have got in contact with us and they give you information so it's good that there's a community there." One of those who has got in touch is Geoff Burrow who is the father of English rugby league player Rob Burrow, who raised awareness of MND before he died of the disease in 2024. "He has been incredibly kind and we've kept in touch," Heather said. Last week Kyle was also paid a visit by former professional boxer Joe Calzaghe, which Melanie says Kyle loved. "We've also been to the rugby and Ty Hafan, who have been brilliant, for respite. All the things like this help because it makes him happy and gives him something to focus on that isn't how he's feeling," Melanie said. "You just wish you were going on holidays rather than doing things in the circumstances we are." Article continues below Kyle with boxer Joe Calzaghe (Image: Family photo ) Going forward the family say they are taking things day by day and will be looking to sell their house to find something more suitable. Kyle has also began a clinical trial which they are unable to speak about but hope will yield some positive results. Get daily breaking news updates on your phone by joining our WhatsApp community here. We occasionally treat members to special offers, promotions and ads from us and our partners. See our Privacy Notice.
