Latest news with #Flory
Yahoo
07-04-2025
- Yahoo
Las Vegas valley organization honoring victims during National Crime Victims' Week
LAS VEGAS — National Crime Victims' Rights Week is a time to honor victims and survivors in the Las Vegas valley while also recognizing the dedicated professionals and volunteers who provide essential support and services. This year's theme is 'Kinship,' emphasizing that shared humanity should be the center of support. 'It's very important that we highlight the pervasive issue of domestic violence, as well as other crimes like sexual assault and human trafficking that are happening right now in our communities,' Beth Flory, CEO of S.A.F.E., said. Each year, thousands of people become victims of crime. In Nevada, law enforcement investigated nearly 13-thousand incidents of 'violent' crime last year, including rape, murder, robbery, and aggravated assault according to the FBI's Crime Data site. 'In Nevada, there were 49 homicides due to domestic violence, and the vast majority of them did occur in Clark County,' Flory said. For more than 30 years, S.A.F.E. House has offered support and services for victims and survivors of domestic violence and other crimes. The organization provides shelter, counseling, advocacy, and community outreach to help end abuse in Las Vegas and beyond. 'Ensuring that victims know that services like ours exist, that they can escape they're situation that they're facing… that our victims have the ability to get out of their situation into safe and affordable housing in our community,' Flory said. 'Ensuring that victims know their rights that they have because of Marsy's Law in 2018, they have many rights afforded to them through the court system.' If you or someone you know is experiencing domestic violence, you can call S.A.F.E. House's 24-hour crisis hotline at (702) 564-3227. For more information, click here. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
12-03-2025
- Health
- Yahoo
Mothers rally and urge action over access to drug
The mother of a six-year-old girl with a rare neurodegenerative disease has urged health bosses to "do the right thing" amid fears over the future of the medication she takes. Flory, from Coventry, has CLN2 Batten disease, an incurable genetic disorder and Brineura is the only approved treatment that slows the condition's progress. Dozens of campaigners were in Westminster on Wednesday after being told NHS access to the drug was set to end in May. Health officials claim "constructive" talks are being held over continued access to it but Flory's mother, Phoebe, said: "We absolutely cannot let this drug be taken away." "We need to do the right thing here, there are 40 children who are dependant on this treatment to survive, to live, for a quality of life." The disease causes a rapid decline in a child's ability to walk, talk and see and is estimated to affect about 40 children in the UK with an average life expectancy of about 10 years. Getting Brineura on the NHS had been "absolutely monumental" for Flory, according to Phoebe, who added she was still walking, climbing and eating due to the drug. Another parent, Anna, from Doncaster, was also at the rally and said removing the medicine would be "absolutely devastating" for her five-year-old daughter Beatrice, known as Bee. "She would decline rapidly and we need Brineura to keep her being Bee and doing all the loving life at the minute. She deserves a chance," she said. Anna told the BBC her daughter had an infusion of the drug every fortnight which "keeps her on her feet and talking". "She's reading books, she's swapping them at school so her life is the same as the other kids in the class," she said. "Knowing that this be just ripped anguish we are living in is absolutely heartbreaking." A fortnightly 300mg dose of Brineura costs £522,722 for each patient every year, according to the National Institute for Health and Care Excellence (NICE). An agreement on access to the drug between NHS England and manufacturer BioMarin is set to expire in May but NICE said "constructive" discussions over permanent access to the drug continued. Wednesday's rally in Westminster was backed by the Batten Disease Family Association and a supporter of the charity, the former England cricket captain Lord Botham, took part. He said he hoped the government would keep the treatment going to allow children with the disease a "much better life". "It's not curing, the research into it needs to be expanded and moved on because it is a brutal disease," he told BBC Radio WM. Follow BBC Coventry & Warwickshire on BBC Sounds, Facebook, X and Instagram. Heartbreak at 'family-destroying' disease of girl, 11 Family's 'excruciating' wait over drug decision 'This disease is one of the worst in the world' Mum fears daughter's rapid deterioration without drug Parents' fears over loss of Batten disease drug National Institute for Health and Care Excellence Batten Disease Family Association
BBC News
12-03-2025
- Health
- BBC News
Coventry and Doncaster mums rally in London and urge action over access to Batten disease drugdrug
The mother of a six-year-old girl with a rare neurodegenerative disease has urged health bosses to "do the right thing" amid fears over the future of the medication she from Coventry, has CLN2 Batten disease, an incurable genetic disorder and Brineura is the only approved treatment that slows the condition's of campaigners were in Westminster on Wednesday after being told NHS access to the drug was set to end in officials claim "constructive" talks are being held over continued access to it but Flory's mother, Phoebe, said: "We absolutely cannot let this drug be taken away." "We need to do the right thing here, there are 40 children who are dependant on this treatment to survive, to live, for a quality of life." The disease causes a rapid decline in a child's ability to walk, talk and see and is estimated to affect about 40 children in the UK with an average life expectancy of about 10 Brineura on the NHS had been "absolutely monumental" for Flory, according to Phoebe, who added she was still walking, climbing and eating due to the parent, Anna, from Doncaster, was also at the rally and said removing the medicine would be "absolutely devastating" for her five-year-old daughter Beatrice, known as Bee."She would decline rapidly and we need Brineura to keep her being Bee and doing all the loving life at the minute. She deserves a chance," she said. Anna told the BBC her daughter had an infusion of the drug every fortnight which "keeps her on her feet and talking"."She's reading books, she's swapping them at school so her life is the same as the other kids in the class," she said."Knowing that this be just ripped anguish we are living in is absolutely heartbreaking." A fortnightly 300mg dose of Brineura costs £522,722 for each patient every year, according to the National Institute for Health and Care Excellence (NICE).An agreement on access to the drug between NHS England and manufacturer BioMarin is set to expire in May but NICE said "constructive" discussions over permanent access to the drug rally in Westminster was backed by the Batten Disease Family Association and a supporter of the charity, the former England cricket captain Lord Botham, took said he hoped the government would keep the treatment going to allow children with the disease a "much better life"."It's not curing, the research into it needs to be expanded and moved on because it is a brutal disease," he told BBC Radio WM. Follow BBC Coventry & Warwickshire on BBC Sounds, Facebook, X and Instagram.
BBC News
21-02-2025
- Health
- BBC News
Parents' fears over loss of CLN2 Batten disease drug
Parents of children with a rare neurodegenerative disease say they are in disbelief that they could within months lose access to the only approved treatment shown to slow its Batten disease is an incurable genetic disorder that causes rapid decline in a child's ability to walk, talk and from Coventry, said daughter Flory's doses of Brineura, or cerliponase alfa, were "keeping her alive".Managed Access Agreement (MMA) between NHS England and the drug's manufacturer BioMarin is set to expire in May, although "constructive" discussions over permanent access continue between the parties, according to the National Institute for Health and Care Excellence (NICE). CLN2 Batten disease is estimated to affect about 40 youngsters in the UK, with average life expectancy about 10 with the condition appear to develop normally for the first few years of life, but can then deteriorate quickly and experience progressive dementia."It's devastating for families to receive that diagnosis," said Liz Brownnutt, chief executive of The Batten Disease Family Association (BDFA). Flory's fortnightly treatment at Birmingham Children's Hospital gave the "incredible, Peppa-Pig-obsessed" six-year-old a "fantastic quality of life", Phoebe said."She is still able to walk, she is still able to communicate in her own way. She's still able to eat, and flick pages of a book. "Her gross motor skills are impeccable. She can pick out a pea from a sweetcorn... she goes to school and she enjoys swimming and going on walks."None of this would be possible without Brineura."Flory was diagnosed two weeks after her third birthday and had immediate brain surgery to install a transfusion slows the progression of disability by synthetically delivering a missing enzyme responsible for clearing waste from brain believes that without the medicine, her daughter would be bed-bound. "She might not even be still here with us, never mind the great energy and life and feistiness that she has," she said, adding she was terrified the treatment could now be taken away."If [it is unavailable], are our children going to be left to die?" she asked."It's unfathomable this is the situation." According to NICE, a fortnightly 300mg dose of Brineura costs £522,722 per patient each described it as a "groundbreaking" treatment that reduced patients' decline by 80%.Time-limited MMA between NHS England and BioMarin since 2019, with data gathered thereafter to consider whether the treatment could be approved agreement, extended for six months last October, expires on 27 May, with NICE telling the BBC there are currently no arrangements to enable access to Brineura "as part of standard NHS care" after that it adds the extension period is being used to try to secure a deal."Discussions between NICE, NHS England and BioMarin so far have been constructive, leading to the agreement of the six-month extension, and are continuing," it England confirmed data was being collected to determine whether the drug was "clinically and cost effective".A BioMarin spokesperson said the drug played an important role as "the only approved treatment" for children with CLN2. "Our discussions with NICE and NHS England are ongoing, and we remain committed to enabling continued access to Brineura for children in England," they parents and the BDFA are worried that a price has effectively been placed on life. As with Flory, the future of treatment for Isaac, eight, from Kettering in Northamptonshire, is also unclear. He too receives the drug at Birmingham Children's Aimee said: "I just feel under a constant state of stress, because we just don't know what's going to happen."She said three years of treatment meant her "funny, happy and cheeky" son could still talk, walk aided by a frame and eat pureed food, but she was in "disbelief" his access to it was under question. "Our children are not just names and numbers, our children are here," Aimee said."They all have a personality, they are human beings."There is no cure for CLN2 Batten disease, so this [drug] is what we've got. This is what we need to work with and they need to carry it on for the sake of the children."The BDFA said families faced "an agonising wait" for Brownnutt explained: "There should not be a price on a child's life – these children deserve the right to a good quality of life and more time with their families." Follow BBC Coventry & Warwickshire on BBC Sounds, Facebook, X and Instagram.
