Latest news with #PraderWilliSyndrome
The Sun
6 days ago
- Entertainment
- The Sun
Katie Price reveals major update on son Harvey's future after being ‘kicked out' of £350k a year college
KATIE Price has opened up about her son Harvey's future after being "kicked out" of his £350k a year college. Harvey, 22, was born with ADHD, autism, genetic condition Prader-Willi Syndrome, and septo-optic dysplasia, which causes blindness. 3 3 He was previously accepted into a £350,000-a-year residential college, but in February Harvey was kicked out for being "too difficult". Now former glamour model Katie, 47, has revealed her eldest child will be leaving college this month and going into independent living. Katie said: "Harvey is doing the countdown for his new place. "He's got his leavers ceremony where they give out certificates and then it's the 'real world' Mr Harvey Price." The mum-of-five continued on the Katie Price Show podcast: "I've found him a place in Southampton which is temporary. "It's got five other adults in it. "Then he moves to his place in October, which is Little Hampton, which will be nearer to be. "He's going from college to independent living." The 21-year-old has Prader-Willi Syndrome, a complex condition that causes obesity and learning difficulties. He is also autistic and partially blind. Katie previously said: "Harvey is supposed to be moving in four-and-a-half weeks, they've changed management and said they won't be able to cater for Harv, because he's too difficult. "So now I've got to find another placement for him... so yeah, more drama to deal with." Later in the show, she said: "We worked months and months for that and he was told four-and-a-half weeks before that he couldn't go there, and Harvey has been doing the countdown. "Well it's stressful because you want the right thing for your child and it is a lot of time and effort to go back and do more meetings, more forms, it is very time-consuming because you want the best for your child." Finding the right care for Harvey has been a constant issue for Katie since her eldest reached adulthood. Last year she had another run-in with a local authority over a place at a specialist college after a report allegedly found Harvey to have "no health issues". His time at £350,000-a-year National Star College, Gloucestershire came under threat as a result. Twice-bankrupt Katie, who lived three hours away in Horsham, West Sussex, appealed the decision. Speaking on an episode of her podcast last spring, she said: "They've given me three months - he has to find somewhere else by July. "With someone like Harvey, you need a transitional move, you need to do it slowly." She added: "I'm trying to find somewhere nearer for Harvey, but three months isn't a long time." What is Prader-Willi syndrome? PWS is a genetic condition that can impact muscle tone, sexual development and the function of the nervous system. As well as this, those with Prader-Willi syndrome are more likely to have learning difficulties. Often, it also sparks a constant desire to eat food and a permanent feeling of hunger which leads to child obesity. However, the syndrome is very rare, with the NHS estimating that it affects "no more than one in every 15,000 children born in England". What causes Prader-Willi syndrome? Those with PWS have a genetic defect on chromosome number 15. In around 70 per cent of cases, some of the DNA information that's inherited from the father is missing, which is referred to as "paternal deletion". Other cases occur when a child has two copies from their mother and none from their father. The condition is obtained purely by chance, but those who have one child with PWS have a less than 1 per cent chance of the next one being affected. 3
Yahoo
28-06-2025
- Business
- Yahoo
TD Cowen Starts Coverage Soleno Therapeutics (SLNO) Stock, Gives Buy
Soleno Therapeutics, Inc. (NASDAQ:SLNO) is one of the 10 Unstoppable Stocks to Buy According to Hedge Funds. On June 23, TD Cowen analyst Tyler Van Buren began coverage of the company's stock with a 'Buy' rating and a price objective of $110, as reported by The Fly. The firm highlighted VYKAT XR as the first-approved treatment for hyperphagia in Prader-Willi syndrome (PWS). As per the firm, the drug bucked the trend of clinical shortcomings in PWS by securing the regulatory approval. A clinical-stage biopharmaceutical company's boardroom, emphasizing the importance of decision-making for the lead candidate development of a once-daily oral tablet. The firm demonstrated confidence in Soleno Therapeutics, Inc. (NASDAQ:SLNO)'s management team, mentioning that they seem to be prepared to execute a strong launch with a high price tag and sizable population to itself. The analysis exhibits that the company has positioned itself for commercial success. The firm remains optimistic and believes that the PWS community's urgency is expected to drive significant uptake of VYKAT XR, reflecting robust demand potential among patients and caregivers. Soleno Therapeutics, Inc. (NASDAQ:SLNO) also announced that its Marketing Authorization Application (MAA) seeking regulatory approval of Diazoxide Choline Prolonged-Release Tablets for the treatment of adults and children aged 4 years and older with PWS, who possess hyperphagia, had been validated by the EMA (European Medicines Agency). TimesSquare Capital Management, an equity investment management company, released its Q1 2025 investor letter. Here is what the fund said: 'Our preferences among Health Care stocks are those companies providing novel therapies for unmet needs that deserve premium pricing, or specialized service providers. Soleno Therapeutics, Inc. (NASDAQ:SLNO) is a clinical-stage biopharmaceutical company focused on developing novel therapeutics for rare diseases. The FDA granted approval of Vyvkat for treating Prader Willi syndrome, a rare genetic disorder that causes life-threatening obesity in children. That development served to boost the stock price by 60% and we decided to book some of the profits by cutting back on the investment.' While we acknowledge the potential of SLNO to grow, our conviction lies in the belief that some AI stocks hold greater promise for delivering higher returns and have limited downside risk. If you are looking for an AI stock that is more promising than SLNO and that has 100x upside potential, check out our report about this cheapest AI stock. READ NEXT: 13 Cheap AI Stocks to Buy According to Analysts and 11 Unstoppable Growth Stocks to Invest in Now Disclosure: None. Error in retrieving data Sign in to access your portfolio Error in retrieving data Error in retrieving data Error in retrieving data Error in retrieving data
Yahoo
22-06-2025
- Business
- Yahoo
Piper Sandler Reaffirms Overweight Rating on Soleno (SLNO) Driven by Strong VYKAT XR Prospects
Soleno Therapeutics Inc. (NASDAQ:SLNO) is one of the 10 biotech stocks screaming a buy now. On June 17, Piper Sandler reiterated an 'Overweight' rating on the stock with a $145 price target. The bullish stance follows positive discussions with a European specialist on the company's VYKAT XR medication for Prader-Willi syndrome (PWS). A scientist in a laboratory examining a microscope in the pursuit of cell therapy discoveries. Piper Sandler consulted a UK-based pediatric endocrinologist to understand the drug better. The specialist indicated she would prescribe the drug as medication for Prader-Willi syndrome (PWS) to all eligible patients upon approval. Soleno Therapeutics' edge with the drug stems from the fact that other PWS treatments are in the early stages of development. Piper Sandler believes VYKAT XT represents significant potential as the first approved treatment specifically addressing PWS, a condition. The biotech company plans to file a Marketing Authorization Application for VYKAT XR in the second quarter. It's also pursuing regulatory approval in Europe as it plans to fill with the European Medicines agency. Following regulatory approvals, Soleno Therapeutics Palms will launch the drug in the first quarter of 2026. Soleno Therapeutics is a biopharmaceutical company that develops and commercializes novel treatments for rare diseases. Their lead product, diazoxide choline extended-release tablets (DCCR), is being developed for Prader-Willi syndrome (PWS), specifically to address hyperphagia (excessive hunger). While we acknowledge the potential of SLNO as an investment, we believe certain AI stocks offer greater upside potential and carry less downside risk. If you're looking for an extremely undervalued AI stock that also stands to benefit significantly from Trump-era tariffs and the onshoring trend, see our free report on the best short-term AI stock. READ NEXT: 13 Best Software Stocks to Buy Now and 11 Must-Buy AI Stocks Analysts Are Betting On. Disclosure: None. Error in retrieving data Sign in to access your portfolio Error in retrieving data Error in retrieving data Error in retrieving data Error in retrieving data
Medscape
17-06-2025
- Health
- Medscape
A Drug for Hunger Offers Clues to Obesity's Complexity
Ali Foley Shenk still remembers the panic when her 10-year-old son, Dean, finished a 20-ounce box of raisins in the seconds the cupboard was left unlocked. They rushed to the emergency room, fearing a dangerous bowel impaction. The irony stung: When Dean was born, he was so weak and floppy he survived only with feeding tubes because he couldn't suck or swallow. He was diagnosed as a baby with Prader-Willi syndrome — a rare disorder sparked by a genetic abnormality. He continued to be disinterested in food for years. But doctors warned that as Dean grew, his hunger would eventually become so uncontrollable he could gain dangerous amounts of weight and even eat until his stomach ruptured. 'It's crazy,' said Foley Shenk, who lives in Richmond, Virginia. 'All of a sudden, they flip.' Prader-Willi syndrome affects up to 20,000 people in the US. The most striking symptom is its most life-threatening: An insatiable hunger known as hyperphagia that prompts caregivers to padlock cupboards and fridges, chain garbage cans, and install cameras. Until recently, the only treatment was growth hormone therapy to help patients stay leaner and grow taller, but it didn't address appetite. In March, the Food and Drug Administration approved Vykat XR, an extended-release version of the existing drug diazoxide choline, which eases the relentless hunger and may offer insights into the biology of extreme appetite and binge eating. This breakthrough for these patients comes as other drugs are revolutionizing how doctors treat obesity, which affects more than 40% of American adults. GLP-1 agonist medications Ozempic, Wegovy, and others also are delivering dramatic results for millions. But what's becoming clear is that obesity isn't one disease — it's many, said Jack Yanovski, a senior obesity researcher at the National Institutes of Health, who co-authored some of the Vykat XR studies. Researchers are learning that obesity's drivers can be environmental, familial, or genetic. 'It only makes sense that it's complex to treat,' Yanovski said. Obesity medicine is likely heading the way of treatments for high blood pressure or diabetes, with three to five effective options for different types of patients. For example, up to 15% of patients in the GLP-1 trials didn't respond to those drugs, and at least one study found the medications didn't significantly help Prader-Willi patients. Yet, researchers say, efforts to understand how to treat obesity's many causes and pathways are now in question as the Trump administration is dismantling the nation's infrastructure for medical discovery. While Health and Human Services Secretary Robert F. Kennedy, Jr, promotes a 'Make America Healthy Again' agenda centered on diet and lifestyle, federal funding for health research is being slashed, including some grants that support the study of obesity. University labs face cuts, FDA staffers are being laid off en masse, and rare disease researchers fear the ripple effects across all medical advances. Even with biotech partnerships — such as the work that led to Vykat XR — progress depends on NIH-funded labs and university researchers. 'That whole thing is likely to get disrupted now,' said Theresa Strong, research director for the Foundation for Prader-Willi Research. HHS spokesperson Andrew Nixon said in a statement that no NIH awards for Prader-Willi syndrome research have been cut. 'We remain committed to supporting critical research into rare diseases and genetic conditions,' he said. But Strong said that already some of the contacts at the FDA she'd spent nearly 15 years educating about the disorder have left the agency. She's heard that some research groups are considering moving their labs to Europe. Early progress in hunger and obesity research is transforming the life of Dean Shenk. During the trial for Vykat XR, his anxiety about food eased so much that his parents began leaving cupboards unlocked. Jennifer Miller, a pediatric endocrinologist at the University of Florida who co-led the Vykat XR trials, treats around 600 Prader-Willi patients, including Dean. She said the impact she's seen is life-changing. Since the drug trial started in 2018, some of her adult patients have begun living independently, getting into college, and starting jobs — milestones that once felt impossible. 'It opens up their world in so many ways.' Over 26 years in practice, she's also seen just how severely the disease hurts patients. One patient ate a 4-lb bag of dehydrated potato flakes; another ingested all 10 frozen pizzas from a Costco pack; some ate pet food. Others have climbed out of windows, dived into dumpsters, even died after being hit by a car while running away from home in search of food. Low muscle tone, developmental delays, cognitive disabilities, and behavioral challenges are also common features of the disorder. Dean attends a special education program, his mother said. He also has narcolepsy and cataplexy — a sudden loss of muscle control triggered by strong emotions. His once-regular meltdowns and skin-picking, which led to deep, infected lesions, were tied to anxiety over his obsessive, almost painful urge to eat. In the trial, though, his hyperphagia was under control, according to Miller and Dean's mother. His lean muscle mass quadrupled, his body fat went down, and his bone mineral density increased. Even the skin-picking stopped, Foley Shenk said. Vykat XR is not a cure for the disease. Instead, it calms overactive neurons in the hypothalamus that release neuropeptide Y — one of the body's strongest hunger signals. 'In most people, if you stop secreting NPY, hunger goes away,' said Anish Bhatnagar, CEO of Soleno Therapeutics, which makes the medication, the company's first drug. 'In Prader-Willi, that off switch doesn't exist. It's literally your brain telling you, 'You're starving,' as you eat.' GLP-1 drugs, by contrast, mimic a gut hormone that helps people feel full by slowing digestion and signaling satiety to the brain. Vykat XR's possible side effects include high blood sugar, increased hair growth, and fluid retention or swelling, but those are trade-offs that many patients are willing to make to get some relief from the most devastating symptom of the condition. Still, the drug's average price of $466,200 a year is staggering even for rare-disease treatments. Soleno said in a statement it expects broad coverage from both private and public insurers and that the copayments will be 'minimal.' Until more insurers start reimbursing the cost, the company is providing the drug free of charge to trial participants. Soleno's stock soared 40% after the FDA nod and has held fairly steady since, with the company valued at nearly $4 billion as of early June. While Vykat XR may be limited in whom it can help with appetite control, obesity researchers are hoping the research behind it may help them decode the complexity of hunger and identify other treatment options. 'Understanding how more targeted therapies work in rare genetic obesity helps us better understand the brain pathways behind appetite,' said Jesse Richards, an internal medicine physician and the director of obesity medicine at the University of Oklahoma-Tulsa's School of Community Medicine. That future may already be taking shape. For Prader-Willi, two other notable phase 3 clinical trials are underway, led by Acadia Pharmaceuticals and Aardvark Therapeutics, each targeting different pathways. Meanwhile, hundreds of trials for general obesity are currently recruiting despite the uncertainties in US medical research funding. That brings more hope to patients like Dean. Nearly 6 years after starting treatment, the now-16-year-old is a calmer, happier kid, his mom said. He's more social, has friends, and can focus better in school. With the impulse to overeat no longer dominating his every thought, he has space for other interests — Star Wars, American Ninja Warrior, and a healthy appreciation for avocados among them. 'Before the drug, it just felt like a dead end. My child was miserable,' Foley Shenk said. 'Now, we have our son back.'
CBS News
16-06-2025
- Health
- CBS News
Breakthrough drug helps rare obesity condition, but other research uncertain amid cuts
Ali Foley Shenk still remembers the panic when her 10-year-old son, Dean, finished a 20-ounce box of raisins in the seconds the cupboard was left unlocked. They rushed to the emergency room, fearing a dangerous bowel impaction. The irony stung: When Dean was born, he was so weak and floppy he survived only with feeding tubes because he couldn't suck or swallow. He was diagnosed as a baby with Prader-Willi syndrome — a rare disorder sparked by a genetic abnormality. He continued to be disinterested in food for years. But doctors warned that as Dean grew, his hunger would eventually become so uncontrollable he could gain dangerous amounts of weight and even eat until his stomach ruptured. "It's crazy," said Foley Shenk, who lives in Richmond, Virginia. "All of a sudden, they flip." Prader-Willi syndrome affects up to 20,000 people in the U.S. The most striking symptom is its most life-threatening: an insatiable hunger known as hyperphagia that prompts caregivers to padlock cupboards and fridges, chain garbage cans, and install cameras. Until recently, the only treatment was growth hormone therapy to help patients stay leaner and grow taller, but it didn't address appetite. In March, the Food and Drug Administration approved Vykat XR, an extended-release version of the existing drug diazoxide choline, which eases the relentless hunger and may offer insights into the biology of extreme appetite and binge eating. This breakthrough for these patients comes as other drugs are revolutionizing how doctors treat obesity, which affects more than 40% of American adults. GLP-1 agonist medications Ozempic, Wegovy, and others also are delivering dramatic results for millions. But what's becoming clear is that obesity isn't one disease — it's many, said Jack Yanovski, a senior obesity researcher at the National Institutes of Health, who co-authored some of the Vykat XR studies. Researchers are learning that obesity's drivers can be environmental, familial, or genetic. "It only makes sense that it's complex to treat," Yanovski said. Obesity medicine is likely heading the way of treatments for high blood pressure or diabetes, with three to five effective options for different types of patients. For example, up to 15% of patients in the GLP-1 trials didn't respond to those drugs, and at least one study found the medications didn't significantly help Prader-Willi patients. Yet, researchers say, efforts to understand how to treat obesity's many causes and pathways are now in question as the Trump administration is dismantling the nation's infrastructure for medical discovery. While Health and Human Services Secretary Robert F. Kennedy Jr. promotes a "Make America Healthy Again" agenda centered on diet and lifestyle, federal funding for health research is being slashed, including some grants that support the study of obesity. University labs face cuts, FDA staffers are being laid off en masse, and rare disease researchers fear the ripple effects across all medical advances. Even with biotech partnerships — such as the work that led to Vykat XR — progress depends on NIH-funded labs and university researchers. "That whole thing is likely to get disrupted now," said Theresa Strong, research director for the Foundation for Prader-Willi Research. HHS spokesperson Andrew Nixon said in a statement that no NIH awards for Prader-Willi syndrome research have been cut. "We remain committed to supporting critical research into rare diseases and genetic conditions," he said. But Strong said that already some of the contacts at the FDA she'd spent nearly 15 years educating about the disorder have left the agency. She's heard that some research groups are considering moving their labs to Europe. Early progress in hunger and obesity research is transforming the life of Dean Shenk. During the trial for Vykat XR, his anxiety about food eased so much that his parents began leaving cupboards unlocked. Jennifer Miller, a pediatric endocrinologist at the University of Florida who co-led the Vykat XR trials, treats around 600 Prader-Willi patients, including Dean. She said the impact she's seen is life-changing. Since the drug trial started in 2018, some of her adult patients have begun living independently, getting into college, and starting jobs — milestones that once felt impossible. "It opens up their world in so many ways." Over 26 years in practice, she's also seen just how severely the disease hurts patients. One patient ate a four-pound bag of dehydrated potato flakes; another ingested all 10 frozen pizzas from a Costco pack; some ate pet food. Others have climbed out of windows, dived into dumpsters, even died after being hit by a car while running away from home in search of food. Low muscle tone, developmental delays, cognitive disabilities, and behavioral challenges are also common features of the disorder. Dean attends a special education program, his mother said. He also has narcolepsy and cataplexy — a sudden loss of muscle control triggered by strong emotions. His once-regular meltdowns and skin-picking, which led to deep, infected lesions, were tied to anxiety over his obsessive, almost painful urge to eat. In the trial, though, his hyperphagia was under control, according to Miller and Dean's mother. His lean muscle mass quadrupled, his body fat went down, and his bone mineral density increased. Even the skin-picking stopped, Foley Shenk said. Ali Foley Shenk (right) and her son Dean, at their home in Richmond, Virginia. Dean was born with Prader-Willi syndrome — a rare disorder that causes hyperphagia, a medical term for insatiable hunger. Since starting on a new medication as part of a clinical trial, his symptoms have improved, his mother says. Parker Michels-Boyce for KFF Health News Vykat XR is not a cure for the disease. Instead, it calms overactive neurons in the hypothalamus that release neuropeptide Y — one of the body's strongest hunger signals. "In most people, if you stop secreting NPY, hunger goes away," said Anish Bhatnagar, CEO of Soleno Therapeutics, which makes the medication, the company's first drug. "In Prader-Willi, that off switch doesn't exist. It's literally your brain telling you, 'You're starving,' as you eat." GLP-1 drugs, by contrast, mimic a gut hormone that helps people feel full by slowing digestion and signaling satiety to the brain. Vykat XR's possible side effects include high blood sugar, increased hair growth, and fluid retention or swelling, but those are trade-offs that many patients are willing to make to get some relief from the most devastating symptom of the condition. Still, the drug's average price of $466,200 a year is staggering even for rare-disease treatments. Soleno said in a statement it expects broad coverage from both private and public insurers and that the copayments will be "minimal." Until more insurers start reimbursing the cost, the company is providing the drug free of charge to trial participants. Soleno's stock soared 40% after the FDA nod and has held fairly steady since, with the company valued at nearly $4 billion as of early June. While Vykat XR may be limited in whom it can help with appetite control, obesity researchers are hoping the research behind it may help them decode the complexity of hunger and identify other treatment options. "Understanding how more targeted therapies work in rare genetic obesity helps us better understand the brain pathways behind appetite," said Jesse Richards, an internal medicine physician and the director of obesity medicine at the University of Oklahoma-Tulsa's School of Community Medicine. That future may already be taking shape. For Prader-Willi, two other notable phase 3 clinical trials are underway, led by Acadia Pharmaceuticals and Aardvark Therapeutics, each targeting different pathways. Meanwhile, hundreds of trials for general obesity are currently recruiting despite the uncertainties in U.S. medical research funding. That brings more hope to patients like Dean. Nearly six years after starting treatment, the now-16-year-old is a calmer, happier kid, his mom said. He's more social, has friends, and can focus better in school. With the impulse to overeat no longer dominating his every thought, he has space for other interests — Star Wars, American Ninja Warrior, and a healthy appreciation for avocados among them. "Before the drug, it just felt like a dead end. My child was miserable," Foley Shenk said. "Now, we have our son back." KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.
