Latest news with #neuroblastoma
ABC News
7 days ago
- Health
- ABC News
Luca Brasi's singer shares update on his son's cancer, mental health and future of the band
Tyler Richardson, bassist and singer of Luca Brasi, has shared an update about his son's cancer treatment, his own mental health, advocating for other kids with infant cancer and the future of the band. It's been nearly two years since the singer's young son was diagnosed with neuroblastoma – an aggressive form of cancer that develops on the kidneys in children under five – after months of no answers and dismissal from doctors. "[My wife] Alix just kept pushing for help and eventually my own GP got us in contact with a paediatrician," Tyler said. "He took one look at Hazzy and said to get him to emergency pronto, post haste. Long story short this visit to the hospital delivered us news we had never even considered; cancer. Bad cancer, a type of childhood cancer that is so aggressive it is scarcely believable." From that point on, the Richardson family moved their whole lives from Tasmania to Melbourne and practically lived at the Childrens' Hospital until late 2024, as neuroblastoma can't be treated in Tasmania. "We began treatment immediately, starting with chemotherapy in the hope to reduce the grapefruit sized tumour which has grown on Hazzy's adrenal gland," Tyler said. "I learnt about anatomy (turns out I have no fucking idea about alot of things), I learnt about medicines, I learnt about a hospital environment, about surgeons, specialists and a whole heap of shit I wish I was still oblivious too. Unfortunately that is just what happens, you have to learn things in order to advocate for your kid. "The nurses and doctors at The Royal Children's in Melbourne are everything to us, we owe them the world, Hazzy is alive because of them, but you need to advocate for your kid daily in order to get what they need." The chemotherapy was able to shrink the tumour enough to be operated on, followed by high dose chemotherapy and stem cell transplants which is incredibly exhausting on the body in its process. "They use high dose to flat line your bone marrow, to absolutely obliterate every cell in your body in order to stop your cells being arseholes and morphing into cancer," Tyler said. "They can hammer kids way harder than us as they are so young and can replicate cells so well. It showed – Hazzy was in a way I can hardly believe possible to this day." Harris was on a cocktail of medications so "a cold or a bloody stiff breeze" wouldn't threaten his chance at survival; morphine, ketamine, fentanyl – the works. "I have seen Hazzy way more cooked than any goober at the club," Tyler said. "And oh boy have I seen some cooked units in my time." Through this incredibly difficult time, Tyler was still trying to play shows with Luca Brasi but found it too emotionally draining to be spending his days around kids who were incredibly unwell and then going off to play a gig at night. "I'd be crying out back, crying on stage and everywhere in between," he said. "It's just too hard. Kids shouldn't get sick and kids shouldn't die like that - I saw so much death, of things I didn't ever think I'd see." He admitted Luca Brasi has been an afterthought while he's been essentially living in the hospital. Longtime guitarist Pat Marshall left the band in late 2024, replaced by Nick Manuell. "In more recent times we have been jamming as a band and fucking hell it feels good," Tyler said. "Sometimes you get so wrapped up in bullshit like accounting and contracts and politics – business stuff, and forget that at one point you were in band simply to be creative. Damn it feels good." Through Harris' treatment, Tyler and his wife learned about a drug on trial in the United States that could possibly keep neuroblastoma away after major surgery – exactly the situation that Harris was in. Not wanting to have to put his immunocompromised kid through risky international travel to access the trial, Tyler advocated hard with friends with government contacts to push to have the drug trial accessible here in Australia. "Somehow it worked," he said. "Hazzy and his pals could access this drug here at home and fight this hell on home soil." For now, Tyler's main priority is being present in the moment with Alix and Harris back at home in Tasmania. He's back working as a teacher full time and spends every minute outside of that cherishing the extra time he's been given with his son. "I have no idea what the future holds, but right now Hazzy is next to me making some kind of cat sculpture he reckons," he said. "The heater is on and we're eating popcorn and chatting and that's enough for right now for me."
News.com.au
7 days ago
- Business
- News.com.au
Health Check: Inoviq cops ASX ‘speeding ticket' query over cancer study headline claims
The bourse's 'please explain' to the cancer drug developer has elicited a lengthy response Last week's tearaway performer, Amplia will launch a second pancreatic cancer trial The private Myro to launch neuroblastoma trial As any wizened sub editor will impart to an impressionable cub reporter – or what's left of either – a headline needs to be short and punchy or else readers will go no further. In adopting a similar approach, cancer drug developer Inoviq (ASX:IIQ) has attracted the gaze of the ASX compliance cops. The bourse took issue with last Wednesday's spiky disclosure headlined: 'New treatment kills 88% of breast and lung cancer cells'. Investors certainly read on, with the shares surging from 38.75 cents to a high of 47 cents (21%). The ASX asked the company whether the announcement conveyed a "fair and balanced' impression of the contents, 'given the early stage of the research'. The bourse asked how Inoviq justified the use of the term "treatment", given the disclosure lacked the 'usual detail' to justify the claims. In response, Inoviq furnished the compliance cops with a response that ran to nine pages, including 12 tables and 27 references. Inoviq said the release made it clear the claims were based on in vitro studies, using cancer cell lines in a laboratory. 'Therefore, the header of the announcement was both fair and balanced in the context used.' 'Best practice' The company said the in vitro work is recognised as standard best practice. This work is 'often mandated by regulatory authorities and scientific guidelines for generating credible, reliable and interpretable results in both laboratory and clinical research settings.' Inoviq also said the potential advantages of its CAR-exosomes over autologous CAR-T therapies in solid tumours were 'generally well known and accepted in the scientific literature based on previous researchers' in vitro and in vivo studies.' CAR-Ts are T-cells that have been tricked up to improve their cancer-busting abilities. CAR-T therapies to date have used patients' own cells. Inoviq strives for an 'off the shelf' treatment availing of donor material. Inoviq noted its headline was limited by the ASX's proforma requiring a 60-word limit. As any grizzled sub will tell you, the headline needs to match the allocated space (now, AI will do the job in a flash). Not the first time In late May, the ASX suspended Inoviq shares and lodged a query after a 25% share romp. Inoviq pointed to the online publication of an abstract poster to American Society of Clinical Oncology (ASCO) conference. This outlined an independent patient validation study of the company's ovarian cancer test. The 'outstanding' blood test results showed more than 94% accuracy. The issue centred on what data was 'new new', as opposed to being previously released data validated by Inoviq's learned peers. Amplia to launch second pancreatic cancer trial Tearaway pancreatic cancer drug developer Amplia (ASX:ATX) has won US ethics clearance to launch a second phase II trial, combining its candidate with standard chemotherapy. Amplia shares last week surged as much as 400% after the company announced separately two 'complete responses' in a local trial. A complete response is defined as the complete disappearance of a tumour lesion, maintained for more than two months. That sounds awfully close to a cure but – corporate cops note – the company did not use the 'c' word. The trial combined Amplia's protein inhibitor narmafotinib (AMP-945) with the chemotherapies gemcitabine and Abraxane (nab-paclitaxel). The proposed second trial will combine AMP-945 with Folfirinox. Folfirinox is a cocktail of four chemo agents, more commony used in the US for advanced pancreatic cancers. Having won central US Institutional Review Board (IRB) ethics assent, Amplia is selecting up to six US sites and two Australian venues. The company expects to recruit 60 to 70 patients, which has a single arm (no placebo group). The study is also open label (the researchers and patients know what treatment is being administered). Take it as Red, Myrio is tackling neuroblastoma Myrio Therapeutics is not listed – or not yet anyway – but keep an eye on this immunotherapy play because of its sole focus on neuroblastoma. Neuroblastoma is a rare but aggressive childhood cancer. Myrio recently won FDA approval to carry out a phase I road test of its CAR-T therapy. This is inelegantly named PHOX2B PC-CAR T and is based on Myrio's tech dubbed Red. Developed with the Children's Hospital of Philadelphia, the proposed therapy targets a specific protein. You guessed it, that's PHOX2B – as expressed in neuroblastoma cells. Red can also treat a much broader range of patients, via a mechanism best described by Google rather than us. Myrio plans to enrol the first patient in mid-2025. The most common tumour of the sympathetic nervous system, neuroblastomas account for 15% of paediatric cancer-related deaths. So, it's rare, but not so rare. Current treatment options result in low response rates and toxicity issues. Clarity abandons program There's a dearth of neuroblastoma work in the ASX-listed sphere. In April Clarity Pharmaceuticals (ASX:CU6) abandoned its program called CL04, which was in phase I/II trial stage across five US sites. The study road-tested Clarity's copper isotope-based agent, 64Cu/67Cu Sartate. While the safety profile was OK, Clarity decided to focus its Sartate program on neuroendocrine tumours, a 'a faster and larger market opportunity'. Clarity has two Rare Paediatric Disease designations from the FDA, thus opening the prospect of winning valuable Priority Review Vouchers (PRVs). What's not to like? The answer is the 'risk to the continuation of the PRV program under the current US administration, the changes to the FDA and the very small patient population in neuroblastoma, despite the high unmet need.' ... but Arovella remains in the game In early May Arovella Therapeutics (ASX:ALA) announced an exclusive option with the Baylor College of Medicine, to license two novel CAR-T receptors. These receptors target solid tumours, including neuroblastoma (highly prevalent in children) and hepatocellular carcinoma (liver cancer). Both CARs have been studied in human clinical trials, reducing the need for extensive preclinical testing. Elsewhere, neuroblastoma progress has been snail-paced. In 2020 the FDA approved Y-mAbs Therapeutics naxitamab (Danyelza). This is a monoclonal antibody for relapsed or refractory high-risk neuroblastoma in the bone or bone marrow. But in late 2022 the agency's oncologic drug advisory committee voted 16 to nil to reject Y-mAbs' omburtamab (Omblastys). The European Medicines Agency swiftly followed suit.
Yahoo
20-06-2025
- Health
- Yahoo
My best friend died at 11 after telling me to live my life for him
Ryan Quinn remembers the first time he met Aaron Murphy, the boy who would become his best friend. He was three and it was his first day at nursery. "After my mum dropped me off, I got very upset. It was the first time that I'd been on my own without her," he said. "As I turned around to go and find her, Aaron was standing behind me. We became inseparable instantly. "We were the closest of friends. We had so much in common. We had a love for Minecraft and for Star Wars." Just months into the friendship between the two boys from Dunfermline, Aaron Murphy was diagnosed with neuroblastoma - a rare form of childhood cancer which develops in nerve tissue and usually affects children under five. After various treatments, Aaron's cancer entered remission. But when he was 10, his cancer returned. He went through further treatment, but there was nothing that could save him. He died three weeks shy of his 12th birthday. Ryan was supposed to visit Aaron in hospital that evening but was picked up from school early. "I was so excited," he said. But the atmosphere in the car on the way home was silent. "When home, my mum sat down next to me and put her arms around me. 'Aaron's gone, Ryan,' she said." Losing a close friend at the age of 11 brought unimaginable grief to Ryan. He was angry at the world and at the disease that took his friend. "I became very reclusive and very depressed," said Ryan. "About three months after Aaron passed away, I started high school, which was hard because it was a massive change. "Suddenly I started this new school where I didn't really know anyone and my best friend wasn't there." On what would have been Aaron's 18th birthday, Ryan has shared what it was like to lose his childhood friend while they were both children themselves. Now 17, Ryan wants to turn his grief into a vehicle for change. "I thought I could put the anger and passion I felt into something - which was campaigning for children's cancer and raising awareness," he told BBC Scotland News. Aaron's last words to his friend were "Live your life for me, Ryan" and that is what he is trying to do. He says he is determined to honour his request. Ryan has undertaken fundraising and lobbying. Last year he did a sky-dive in memory of Aaron to raise money for a charity called the Team Jak Foundation which provides support for families and friends of people affected by cancer. It helped Ryan to deal with his grief and he said he wanted to pay them back. Earlier this year he spoke at the Scottish Labour Party conference. After that he managed to secure a meeting with Scotland's Health Minister Neil Gray who invited him to the Scottish Parliament to discuss the issues that Ryan is highlighting. Mr Gray told Ryan he was committed to improving outcomes for children and young people with cancer. Thoughts turned to Aaron during the meeting. "I thought, 'What would Aaron think of what I'm doing?' "There was one empty chair at the table. "I am confident that Aaron was sat in it, and I hope I did him proud." June is a hard month for Ryan. As he reaches adulthood, he has lots of questions about what happened to his best friend. He said " Recently I bought my first car after passing my driving test and the first thought I had when I put the key into the ignition was 'Why do I get to do this and Aaron doesn't?' And I'm constantly reminded of that as we approach Aaron's 18th birthday." Six years on from Aaron's death, Ryan says he misses his friend more than ever. "I loved Aaron with my whole heart and I always will," he said. "Aaron's death inspired me to be a campaigner so that he and the other children and young people who die from cancer each year are never forgotten. "I want to make sure that Aaron's story gets to the right places and on the right people's desks and I hope that meaningful change will be made." More stories from Edinburgh, Fife & East More stories from Scotland 'Radiographer started crying during my cancer scan'
CTV News
19-06-2025
- Health
- CTV News
Community throws ‘super party' to support 5-year-old Abby's cancer fight
Abby Posie is only five-years-old and she's already facing a battle that most kids her age couldn't even wrap their heads around. After bravely beating cancer once, Abby is now fighting neuroblastoma for a second time. (Supplied) Abby Posie is only five-years-old yet she's already facing a battle that most kids her age couldn't even wrap their heads around. After bravely beating cancer once, this special soul is now fighting neuroblastoma for a second time. Neuroblastoma is a rare childhood cancer tumor that develops from nerve cells called neuroblasts. It is most commonly diagnosed in young children under the age of five. The local community is stepping up to help support Abby along her courageous battle, 'We want to rally around her and her family, try to build some community, some support because it has a positive impact on outcomes and we believe Abby deserves the best possible outcome,' shared Christine Gordon, operations manager of The 705 Recovery Community Centre. This Saturday, from 2 p.m. to 5 p.m., the community centre will host 'Abby's Super Party' a superhero-themed family fundraiser packed with activities and entertainment. The special celebration takes place at The 705 Recovery Community Centre, located at 56 Dunlop Street West. Attendees can enjoy a community BBQ, games, face painting, and live music. Everyone is encouraged to dress as their favourite superhero. All proceeds from the event will go directly towards Abby's family, helping them with the high costs of countless travel hours, and time away from work as they continue to conquer trips to Toronto's SickKids Hospital for her treatment. With the community's support Abby and her family won't have to face this journey alone, 'Abby is a real-life superhero,' says organizers. 'Now it's time for the rest of us to be hers.' To show your support for little Abby, click here.
BBC News
19-06-2025
- Health
- BBC News
My best friend died at 11 after telling me to live life for him
Ryan Quinn remembers the first time he met Aaron Murphy, the boy who would become his best friend. He was three and it was his first day at nursery."After my mum dropped me off, I got very upset. It was the first time that I'd been on my own without her," he said."As I turned around to go and find her, Aaron was standing behind me. We became inseparable instantly."We were the closest of friends. We had so much in common. We had a love for Minecraft and for Star Wars." Just months into the friendship between the two boys from Dunfermline, Aaron Murphy was diagnosed with neuroblastoma - a rare form of childhood cancer which develops in nerve tissue and usually affects children under various treatments, Aaron's cancer entered remission. But when he was 10, his cancer went through further treatment, but there was nothing that could save died three weeks shy of his 12th birthday. Ryan was supposed to visit Aaron in hospital that evening but was picked up from school early."I was so excited," he said. But the atmosphere in the car on the way home was silent."When home, my mum sat down next to me and put her arms around me. 'Aaron's gone, Ryan,' she said." Losing a close friend at the age of 11 brought unimaginable grief to was angry at the world and at the disease that took his friend."I became very reclusive and very depressed," said Ryan."About three months after Aaron passed away, I started high school, which was hard because it was a massive change. "Suddenly I started this new school where I didn't really know anyone and my best friend wasn't there." On what would have been Aaron's 18th birthday, Ryan has shared what it was like to lose his childhood friend while they were both children 17, Ryan wants to turn his grief into a vehicle for change."I thought I could put the anger and passion I felt into something - which was campaigning for children's cancer and raising awareness," he told BBC Scotland News. Delayed cancer diagnosis Aaron's last words to his friend were "Live your life for me, Ryan" and that is what he is trying to says he is determined to honour his request. Ryan has undertaken fundraising and year he did a sky-dive in memory of Aaron to raise money for a charity called the Team Jak Foundation which provides support for families and friends of people affected by helped Ryan to deal with his grief and he said he wanted to pay them this year he spoke at the Scottish Labour Party that he managed to secure a meeting with Scotland's Health Minister Neil Gray who invited him to the Scottish Parliament to discuss the issues that Ryan is Gray told Ryan he was committed to improving outcomes for children and young people with cancer. Thoughts turned to Aaron during the meeting."I thought, 'What would Aaron think of what I'm doing?'"There was one empty chair at the table."I am confident that Aaron was sat in it, and I hope I did him proud."June is a hard month for Ryan. As he reaches adulthood, he has lots of questions about what happened to his best said " Recently I bought my first car after passing my driving test and the first thought I had when I put the key into the ignition was 'Why do I get to do this and Aaron doesn't?' And I'm constantly reminded of that as we approach Aaron's 18th birthday."Six years on from Aaron's death, Ryan says he misses his friend more than ever."I loved Aaron with my whole heart and I always will," he said."Aaron's death inspired me to be a campaigner so that he and the other children and young people who die from cancer each year are never forgotten. "I want to make sure that Aaron's story gets to the right places and on the right people's desks and I hope that meaningful change will be made."
