Latest news with #CharcotMarieTooth
CBC
24-05-2025
- Health
- CBC
He needs the medical care found in St. John's. For more than a year he's faced roadblocks
A young man from Newfoundland is hoping a move to St. John's will help him gain more independence, enable him to one day contribute to his family's finances and get access to better medical care — but for more than a year those goals have been stymied. Nathan Pointon, 21, has Charcot-Marie-Tooth disease — a progressive, degenerative disease involving the peripheral nerves. He hopes a move to St. John's will solve multiple problems. "Other than the obvious, like medical help … it's more the social aspect because, again, around here if you can't go outside or anything like that, it's very isolating," Pointon told CBC News. Pointon was first diagnosed with Charcot-Marie-Tooth disease when he was in junior high. It began with numbness of the toes, then affected his legs up to the knees. Over the past couple years, he's developed numbness in his fingers and arms, and now has to wear hearing aids because it's spread to his ears. "Walking is getting harder because whenever I'm walking for too long, which might I add is only like 10-15 minutes, it feels like my ankles are going to break," he said. Pointon and his mother Angela Newhook made the decision to move based on advice from doctors more than a year ago. Newhook says he'll get better medical care in St. John's. "So that [Pointon] can get set up with a neurologist out there because it's mainly a neurologist that keeps track of how it's progressing, any additional testing, stuff like that," Newhook said. WATCH | Nathan Pointon is facing challenges in care: A 21-year-old with a rare disease is moving to St. John's for medical care. But more obstacles are in the way 1 day ago Duration 3:03 Nathan Pointon and his mother are moving from Botwood to St. John's. Pointon has a rare, degenerative nerve disease and until he turned 18, he was connected to the Janeway. But now, access and care are less certain. The CBC's Troy Turner reports. When the decision was made, they were put on a Newfoundland and Labrador Housing Corporation wait list but even listed as a "medical priority," that list can come with a two-year wait. In a statement, Newfoundland and Labrador Housing said from April 1, 2024 to March 31, 2025, there were 2,498 people on the wait list. About 1,300 people came off the wait list during that time, including 860 in the Avalon region. Newhook and Pointon began the search for an apartment themselves but it proved to be a struggle to find accommodations. Pointon says he would see a listing, send a message and explain his situation. "I would get messages back within an hour saying, 'It's gone.'" Then, while looking for a place, Newhook suffered an injury to her ankle, and it put her off work for six months. Now, with accommodations finally arranged, she wasn't able to work. "It looks like we're going to have to go with the most cost-effective method, which is the U-Haul, which is still going to range between $1,500 to $2,000," Newhook said. "I find it very hard asking for financial help. But even his doctor is like, 'Do a GoFundMe.' So we've set up a fundraiser." Still, they plan to move to St. John's in June. Pointon says he's looking forward to a day when he can contribute financially to their household, but his mom says her priority right now is to improve his quality of life. "He's very hard on himself," Newhook said, adding that in addition to Charcot-Marie-Tooth disease, her son has also been diagnosed with high-functioning autism and ADHD as well as facing other health struggles. "I think that's what I look forward to the most, is seeing Nathan strive. And it's going to be so good for his confidence."
Fox News
24-05-2025
- Health
- Fox News
AI exoskeleton gives wheelchair users the freedom to walk again
For Caroline Laubach, being a Wandercraft test pilot is about more than just trying out new technology. It's about reclaiming a sense of freedom and connection that many wheelchair users miss. Laubach, a spinal stroke survivor and full-time wheelchair user, has played a key role in demonstrating the personal AI-powered prototype exoskeleton's development, and her experience highlights just how life-changing this device can be. "When I'm in the exoskeleton, I feel more free than I do in my daily life," said Laubach. "It gives me the opportunity to walk around and talk to people at eye level. I don't have to look up at people all the time. "It makes me feel more visible and able to connect with others. One thing I noticed right away, was how inclusive the exoskeleton would be to a wide variety of disabilities. The goal is to have disabled people able to use this exoskeleton to live their daily life out in the world; I can definitely see that happening in the future." Laubach's story is at the heart of Wandercraft's mission: to help people move through the world with greater walking independence and upright mobility. Wandercraft's journey began with a personal challenge. Nicolas Simon, the company's co-founder, saw his own family members struggle with mobility due to Charcot-Marie-Tooth disease, a genetic condition. As a student and robotics enthusiast, Simon wanted to create something that could help his brother and others like him walk again. Alongside Matthieu Masselin and Jean-Louis Constanza, who also had a personal connection to the cause, Simon founded Wandercraft in 2012. Their goal was simple but ambitious: to bring advanced mobility solutions to the estimated 80 million people worldwide who rely on wheelchairs. Wandercraft's first exoskeleton, Atalante X, is already making a difference in over 100 clinics and research centers worldwide. This device, cleared by the Food and Drug Administration (FDA) and approved in Europe, helps patients take over a million steps each month as part of their rehabilitation. It has already helped hundreds regain some mobility and independence. But Wandercraft wanted to go further. The new Personal Exoskeleton protoype, now in clinical trials in New York and New Jersey, is designed for daily life, at home, at work, and out in the community. It uses NVIDIA AI to adapt instantly to each user's movements, providing smooth, stable walking on all sorts of surfaces, from sidewalks to carpets. Users control the exoskeleton with a joystick, making it accessible to people with a wide range of abilities. A big part of Wandercraft's progress comes from its partnership with Nvidia. The team uses Nvidia Isaac Sim, a powerful simulation tool, to test and improve the exoskeleton in virtual environments before real-world trials. They're also exploring Nvidia's healthcare robotics and edge computing platforms to make the device smarter and more responsive. This technology means the exoskeleton can someday keep up with everyday life, walking at a normal pace, crossing streets, and even handling stairs. As Simon puts it, "It's essential for the exoskeleton to be fast enough that it can be used in the real world. By integrating NVIDIA AI into the device, we can someday enable users to walk at an average pace, cross the road, and go up and down stairs." Wandercraft's commitment to improving lives goes beyond just building exoskeletons. In the heart of Manhattan, the company has opened Walk in New York by Wandercraft, a state-of-the-art physical therapy practice and Atalante X walk center located at 345 Park Avenue South. This groundbreaking center is the first of its kind in the U.S. and represents a partnership between Wandercraft and licensed physical therapy professionals to help individuals with neurological conditions move more, move better and move again. At Walk in New York, movement is truly seen as medicine. The center offers personalized screenings with licensed physical therapists, hands-free walking sessions using the Atalante X exoskeleton, and comprehensive neurorehabilitation services. Patients can experience walking again in a safe, professional environment, regardless of their trunk or upper body strength. Each therapy plan is tailored to the individual, and progress is tracked objectively to ensure the best possible outcomes. The technology at Walk in New York goes beyond exoskeletons. The center features virtual reality systems for real-time movement feedback, mirror therapy to promote motor recovery, advanced gait analysis, and immersive environments that make rehabilitation more engaging and effective. Walk in New York is also set to become the hub for Wandercraft's Personal Exoskeleton, where individuals will be able to receive their own devices, undergo training, and access ongoing support as this technology becomes available for everyday use. The center's focus on personalized care and innovation makes it a welcoming space for anyone interested in rediscovering mobility, whether for themselves or a loved one. At Walk in New York, the belief is simple: movement is medicine, and everyone deserves the chance to move through life with confidence and independence. Wandercraft is working toward FDA approval for the Personal Exoskeleton, with hopes of making it available to millions of wheelchair users in the U.S. and beyond. The company is actively recruiting participants for its clinical trials and is committed to making this technology accessible, with plans for Medicare coverage in the future. Are you an adult 18 or older with a complete or incomplete motor SCI at or above the T6 vertebra? If so, you might be eligible for our clinical trial. To participate, you'll need a physically able companion to assist you during sessions. If you don't have someone in mind, don't worry, Wandercraft is creating a volunteer network to help connect trial participants with companions. Both patients and companions should be able to speak English or communicate well with a translator. If you meet these criteria, or if you're interested in volunteering as a companion, you can reach out to Wandercraft by emailing them at clinicaltrials@ Despite all the advances in technology over the past few decades, tens of millions of people still rely on wheelchairs. Wandercraft's Personal Exoskeleton, shaped by the real-life experiences of test pilots like Laubach, is offering a new way forward, one that brings freedom, independence and a renewed sense of possibility. Laubach's story really shows how powerful this technology can be when it is designed with real people in mind. Wandercraft's Personal Exoskeleton isn't just about robotics or AI; it's about helping people stand tall, connect with others, and live life on their own terms. Every step taken with this device brings that vision closer to reality, making the future of mobility feel more hopeful and within reach than ever before. In what ways could AI-driven wearable robotics reshape how we think about disability and independence? Let us know by writing us at For more of my tech tips and security alerts, subscribe to my free CyberGuy Report Newsletter by heading to Follow Kurt on his social channels: Answers to the most-asked CyberGuy questions: New from Kurt: Copyright 2025 All rights reserved.
Yahoo
22-05-2025
- Entertainment
- Yahoo
Country music star gives emotional speech on stage after incurable disease diagnosis
Following his announcement of having an incurable disease, a famous country singer wrapped up his final stop on tour. While on stage in Milwaukee, Wisconsin, Alan Jackson delivered a heartfelt speech to the crowd. 'Y'all may have heard that I'm kinda winding downing, and in fact this is my last road show of my career,' Jackson told the audience. 'Y'all gonna make me tear up out here. But I will say, this is my last road show out here, but we're planning on doing a big finale show in Nashville next summer sometime. It just felt like I had to end it all where it all started. And that's in Nashville, Tennessee — Music City,' Jackson continued, adding, 'so I gotta do the last one there.' In September 2021, Jackson revealed his diagnosis of Charcot-Marie-Tooth disease, a rare chronic illness that affects the nerves that control muscle movement, according to the Cleveland Clinic. It's a condition that usually affects how someone feels in their feet and hands. The disease is not curable, but physical therapy and assistive devices or shoes can be used as treatments. Jackson addressed the diagnosis during an interview on NBC's 'Today' in 2021. 'I have this neuropathy and neurological disease,' Jackson said during the interview. 'It's genetic that I inherited from my no cure for it, but it's been affecting me for years. And it's getting more and more obvious. And I know I'm stumbling around on stage. And now I'm having a little trouble balancing, even in front of the microphone, and so I just feel very uncomfortable.' 'It's not going to kill me. It's not deadly. But it's related (to) muscular dystrophy and Parkinson's disease,' he added. Concern is building over TSA facial recognition tech. Here's how to opt out Food hub to launch at Worcester's Union Station in June Lynnfield man found dead in apartment played semi-pro football Mass. casino winner: $1 bet ends in jackpot win Meet the Mass. lawmaker marshaling the resistance to Trump's 'Big Beautiful Bill' Read the original article on MassLive.
Yahoo
09-05-2025
- Entertainment
- Yahoo
Alan Jackson Makes Emotional Return to 2025 ACM Awards amid Health Battle: 'This Is Mind-Blowing'
Alan Jackson made an emotional return to the ACM Awards. On Thursday, May 8, the country icon took the stage at the 2025 awards show, where he delivered a sweet rendition of his 2003 track "Remember When" amid his health battle After performing the song, Jackson, 66, took the stage to receive the first-ever Alan Jackson Lifetime Achievement Award. "Usually one of my fans tells me they named their dog after me, and I thought that was really something," he said while accepting his award. "I came to Nashville with a paper sack full of songs and a crazy dream and that all these years later I'm standing here receiving such an honor is mind-blowing." He added: "I thank God all the time for all the people that have been a part of my life and career and maintain this all this time." Jackson then thanked his wife Denise "who's been my best friend since I was 17 years old." "She's loved me through the good and the bad, the happy and the sad," he said. "Influenced me, gave me three beautiful daughters, and she's helped me keep my feet on the ground all these years. I would not be here without her.' We'll all remember this @OfficialJackson performance 🎤 Are you tuned in to the #ACMawards?? Watch here → — ACM Awards (@ACMawards) May 9, 2025 In September 2021, Jackson revealed on the TODAY show that for the prior 10 years he had been dealing with a degenerative nerve condition called Charcot-Marie-Tooth disease, which had affected his ability to walk and perform on stage. "I've been reluctant to talk about this publicly and to my fans, but it's been a while, and it's starting to affect my performance on stage a little bit where I don't feel comfortable," he told Jenna Bush Hager. "I just wanted the fans and the public to know if they've come to see me in the last few years or if they come to see me in the future if I play anymore, what's going on." Added Jackson: "I don't want them to think I'm drunk on stage because I'm having problems with mobility and balance. I have this neuropathy, neurological disease I inherited from my daddy." Check out all of PEOPLE's full ACM Awards coverage "The Country Boy" musician said his late father, as well as his paternal grandmother and older sister. According to the National Institute of Neurological Disorders and Stroke, Charcot-Marie-Tooth affects the nerves that control the muscles, and is relatively common, affecting an estimated 2.6 million people worldwide. There is no known cure for the disease, but it can be managed with supportive therapy. It also rarely affects the muscles involved in vital functions such as breathing. At the time, Jackson said his illness was becoming "more and more obvious" since it affects his balance on stage. "I just want people to know that's why I look like I do, if they're wondering," he said. "I don't want to appear like some whiny celebrity. It's not going to kill me, it's not deadly… It's not fatal — it's just going to disable me eventually." The 60th Academy of Country Music Awards, hosted by Reba McEntire, streamed live on Prime Video from Ford Center at The Star in Frisco, Texas. Read the original article on People
