Latest news with #musculardystrophy
BBC News
3 days ago
- Business
- BBC News
'How muscular dystrophy changed life on our Dufton farm'
A farmer living with a degenerative disease has shared how he adapted life on the farm to overcome the challenges of his Laidlow, 52, has muscular dystrophy - a progressive condition which causes muscles to sheep, climbing up and down a tractor and carrying out maintenance work at his farm in Dufton, near Appleby in Cumbria, may have become difficult tasks, but with support from his family and a few adaptations, he continues to run the business."I've got so much going for me in life at the minute and I live in such a beautiful place," he said. "You do get down thinking about the future from time to time, but really I've got such a good support." Mr Laidlow's condition means it is hard for him to handle sheep, but instead of giving up farming, they switched from textile sheep to Herdwicks, which are smaller and easier to handle for the rest of his family without his uses step ladders to get into his tractor and access to the farm has been changed to reduce trip hazards."When you're active all your life you don't want to stop, but you just need to adjust things," Mr Laidlow said."It's incredibly frustrating, you see something like a gap in a drystone wall, it used to take me half an hour to fix beforehand." 'Getting old quick' Speaking to BBC Radio Cumbria's Mike Zeller at Breakfast, the father-of-three said he first noticed his symptoms at the start of the coronavirus lockdown, when he found it hard to get into the tractor or climb the stairs at night."I know when you get tired and a bit achy at night sometimes all of those are difficult, but it just seemed to be too consistent," Mr Laidlow he thought it was a result of being unfit and overweight, so he tried to address that and attended appointments with chiropractors and was one of those professionals who suggested his problems might stem elsewhere, which kickstarted the process of receiving a diagnosis."It was a shock obviously, because when you start reading up about it - it's the beginning of a lifechanging thing," Mr Laidlow said."But in the same breath - and I know it sounds stupid - I was a bit relieved that I was diagnosed with something, because I was thinking 'I'm getting old too quickly, I can't continue doing what I'm doing for a living'." Accessible countryside With support from his family and careful planning, he has adapted farm life to work for him, but also for others who may struggle with their daughter Katie, 18, who also works on the farm, said they worked to make footpaths on their land more accessible."We tried our best to replace stiles with gates," she said."Just simple things like making sure they're wide enough to allow wheelchairs and pushchairs - it does affect everybody really."The teenager recently ran the Manchester marathon in aid of charity Muscular event day was the first time she ran on roads, having trained on the farm, fields and surrounding fells."Living here with a hill in every direction I go in, I do think it helped me massively for running the marathon - I think it improved my overall stamina and endurance," she said. Follow BBC Cumbria on X, Facebook, Nextdoor and Instagram.
CTV News
26-05-2025
- Entertainment
- CTV News
‘Clothes are meant to fit you, not the other way around': N.S. designer creates inclusive clothing line
Navdeep Parmanand, the founder of Celebrate Your Curves, is pictured with models Jessie Taylor and Jaskirat Singh Pandher. (CTV Atlantic / Brianne Foley) Navdeep Parmanand has created an accessible custom clothing line in honour of her late brother who lived with muscular dystrophy. 'You're going to live on, through the people that I support in my life,' Parmanand told CTV through tears when remembering her brother. 'It's not that a legacy has ended, even though you're not here. I am supporting you and I see you in every person that walks into this world.' Vikas passed away in 2020, inspiring Parmanand to pursue something she always dreamed of. 'It was a lot of grief and a lot of pain for me. After I went through the grief period I was like there is nothing holding me back and I really want to do it,' she said. Navdeep Parmanand Navdeep Parmanand is pictured with her late brother Vikas. With the support from her parents back in India, she began Celebrate Your Curves. 'We create custom clothing for people of all shapes, all sizes and all abilities. So, we have some wool long blazers and we also have custom, made-to-measure full pantsuits as well and then we have introduced our adaptive clothing line last year,' said Parmanand. The clothes are designed to ensure everyone feels good in what they wear and the accessible pieces include Velcro or magnets instead of buttons. 'If I'm going out and I want to stand out and I want to be just my own self and my own body, I need clothing that fits me,' said Parmanand. 'Clothes are meant to fit you, not the other way around. So that's what kind of carried me into the fashion industry.' Parmanand learned to sew on her own at a young age and says creating the custom clothes is a way she is able to give back to the community and also her family. She designs the clothes and takes custom measurements and then sends them back to India where her aunts have a facility set up to sew the pieces. 'Creating meaningful employment for them and their daughters who are going to school. Because the area that I come from, it's still very backward, and there's a lot of focus on boys and girls and differentiation,' she explained. 'So, they create the clothing and I'm very happy to support their employment through this venture.' Parmanand is working to create a system that allows her customers to take their own measurements in the comfort of their homes. 'I'm also working on a third-party, 3D body measurement tool to be integrated into our website, and I recently got a funding for that,' she said. Celebrate Your Curves Celebrate Your Curves is an inclusive clothing line created by Navdeep Parmanand. (CTV Atlantic / Brianne Foley) She is also joining forces with the Dartmouth Adult Services Centre (DASC) to create clothes and inspire a love of fashion. 'The mission and the purpose is to amplify those voices and then work with people with disabilities,' she explained. Parmanand is organizing a fashion show event called 'Beyond the Runway- A Business and fashion Affair.' 'It's not a normal fashion show or average fashion show. You're going to see people of all shapes, sizes, ages and abilities. In partnership with DASC, clients will be our models, wheelchair users as well, and they're going to rock the runway,' she said. She will be shining the spotlight on other women in business as well. 'We're going to have about 20 to 25 women entrepreneurs at the booths to create an opportunity for people to come together and support those local women entrepreneurs and innovators that are right in the heart of Halifax,' said Parmanand. Even with all these things on the go, Parmanand said she's just beginning. 'I want to open a school someday,' she said. 'Vikas Rehabilitation School or Vikas Memorial School, to support children with special needs.' For more Nova Scotia news, visit our dedicated provincial page
South China Morning Post
25-05-2025
- Entertainment
- South China Morning Post
Spark Study Buddy (Challenger): Breakdancing boy in China defies gravity
Content provided by British Council [1] An 11-year-old boy with a disability in China has gained attention on social media after he put aside his crutches to show off complex moves in a street dance competition. Li Junhao, from Bozhou in Anhui province, was raised by parents who also have disabilities. He was diagnosed with congenital muscular dystrophy at birth, which has led to weakness in his muscles and deformities in his leg joints. [2] A viral video posted on April 9 featured Junhao confidently throwing away his crutches, lifting himself into a handstand and starting a breakdancing routine with difficult moves. Throughout his performance, Junhao relied only on his arms and core, executing moves where his legs swung in the air in circular motions. [3] In a push-up position, he kept his legs off the floor while bouncing and rotating his entire body to the rhythm. Junhao finished with an iconic 'freeze' pose. In this pose, he balanced his entire body on one arm, defying gravity, captivating the audience and earning applause. [4] Junhao's childhood was marked by numerous hospital stays. According to his father, Junhao underwent four major surgeries in different cities and endured excruciating pain. 'Even in his worst moments, he would say, 'I must stand up!'' his father said. Junhao's breakdancing instructor, Qiu Yu, said he trains for two hours in the evening on school days. It goes up to around seven hours on the weekend. [5] 'He never says he is tired, nor has he ever said he does not want to train. He is more hardworking and resilient than any of the other kids I have trained,' Qiu told the Yangtze Evening Post. Junhao's hard work has earned him accolades on stage. [6] In 2023, he secured a spot in the top 32 at a national breakdancing competition in Chuzhou, Anhui. Last year, he won the Best Performance Award at the 5th National Art Biennale Disabled Youth in Beijing. His resilience is also deeply rooted in his family. Junhao's father has only 0.01 visual acuity. His mother also suffers from congenital muscular atrophy. Both his parents have never succumbed to life's challenges. [7] They run a Chinese massage shop and have helped other disabled people learn vocational skills, earning them multiple city-level honours. Junhao is also ambitious. 'I want to become a professional breakdancer and hope to one day perform on stage at the Asian Games!' he said. Source: South China Morning Post, April 30 Questions 1. In paragraph 1, Junhao was diagnosed with congenital muscular dystrophy ... A. when he was born. B. after he began dancing. C. soon after starting school. D. after an accident. 2. Which word can replace 'executing' in paragraph 2? A. avoiding B. performing C. initiating D. none of the above 3. How does Junhao achieve the 'freeze' pose mentioned in paragraph 3? 4. What do the 'accolades' in paragraph 5 refer to? 5. According to paragraph 6, which of Junhao's family members has a similar health condition? 6. Using information from paragraph 4, write one question using 'when' and one question using 'what' based on the sentences below. (4 marks) (i) Question: When (ii) Question: What Sentence: In 2023, Junhao finished in the top 32 at a national breakdancing contest in Chuzhou. (iii) Question: When (iv) Question: What Sentence: Junhao won the Best Performance Award at the 5th National Art Biennale Disabled Youth. Junhao is a resilient child who has faced multiple surgeries and intense pain. Photo: CCTV Answers 1. A 2. B 3. He balances his entire body on one arm. 4. the awards that Junhao won in various breakdancing competitions (accept all similar answers). 5. his mother 6. (i) When did Junhao finish in the top 32 at a national competition in Chuzhou?; (ii) What was Junhao's achievement at the national breakdancing contest in Chuzhou?; (iii) When did Junhao win the Best Performance Award?; (iv) What award did Junhao win at the 5th National Art Biennale Disabled Youth?
BBC News
13-05-2025
- Sport
- BBC News
Oxford 10k event set to raise £300k for Muscular Dystrophy UK
Sold-out charity races completed by about 6,600 people on Sunday are on course to raise £300, Bidwells Oxford 10k and junior 3k races were organised by Muscular Dystrophy UK, which has organised the event since was inspired by local boy Daniel Cleaver, who had muscular dystrophy and died aged 12 in 1990, and Sunday's edition was attended by local schools and other fundraising included about 180 pupils from Oxford's Summer Fields School who completed the 3k (1.8 miles) and Red Watch from the city's Rewley Road fire station who completed the 10k (6.2 miles) in full kit. The firefighters, who also carried a 50kg casualty training mannequin, raised over £1,100 for Muscular Dystrophy UK and the Fire Fighters 10k race was started by Tristan Boedts, 28, who has limb girdle muscular dystrophy (LGMD) and completed it last year. He completed Sunday's course in about two and a half hours, accompanied by family and friends. "This is a true community event, and we're delighted that it continues to grow, selling out in advance for a second year running," Jessie Keighley, Muscular Dystrophy UK's events manager, said."The money raised will make a huge difference, helping us to continue funding ground-breaking research and supporting those living with muscle wasting and weakening conditions." You can follow BBC Oxfordshire on Facebook, X (Twitter), or Instagram.
Associated Press
12-05-2025
- Health
- Associated Press
Parent Project Muscular Dystrophy Announces Publication of Updated PJ Nicholoff Steroid Protocol, Advancing Care for Individuals with Duchenne
WASHINGTON, May 12, 2025 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), in partnership with the OPTIMIZE DMD Consortium, an international consortium that aims to advance the standard of care, education, advocacy and research in endocrine and bone health for individuals with Duchenne, is proud to announce the publication of the updated version of the PJ Nicholoff Steroid Protocol for Healthcare Providers. This resource has been a lifeline for families, providing doctors with clear guidance on managing steroid dosing during illness and emergencies, and is designed to enhance the clinical management of adrenal insufficiency and steroid stress dosing for individuals on long-term corticosteroid therapies. This milestone comes as PPMD celebrates the 10th anniversary of the first publication of the PJ Nicholoff Steroid Protocol. The PJ Nicholoff Steroid Protocol has been instrumental in educating medical professionals on the unique care considerations for patients with Duchenne on long-term steroids who may have accompanying adrenal suppression. The newly revised edition reflects the latest advancements in clinical research, changes in the approved therapy landscape, and critical safety measures to improve patient outcomes. PPMD is grateful to those working to keep this information up to date and relative to our Duchenne community. 'At PPMD, we are committed to ensuring that every individual with Duchenne receives the highest standard of care,' said Rachel Schrader, MS, APRN, CPNP-PC, PPMD's Vice President, Clinical Care & Education. 'This significant update to the PJ Nicholoff Steroid Protocol reflects the rapidly changing landscape of approved therapies and subsequent changes to clinical care. The Protocol provides expert recommendations to better equip healthcare professionals and caregivers with the most up-to-date knowledge to safely manage patients experiencing illness, injury, or safely navigating other substantive changes to their steroid regimen.' The revised the PJ Nicholoff Steroid Protocol expands beyond the previous iteration and includes six 'Critical Concepts,' including: 'The PJ Nicholoff Protocol is a 'how-to' guide designed to assist healthcare professionals in the prevention of adrenal insufficiency for people with Duchenne, a potentially serious complication of corticosteroid therapy,' said Leanne Ward, MD, FRCPC, a pediatric endocrinologist at the Children's Hospital of Eastern Ontario and Founder and Chair of the OPTIMIZE DMD Consortium. 'The 2025 edition, developed under the expert leadership of Dr. David Weber (Children's Hospital of Philadelphia) and Dr. Anne Marie Sbrocchi (Montreal Children's Hospital), provides important updates including the management of adrenal insufficiency for individuals receiving the novel steroid, vamorolone. On behalf of the OPTIMIZE DMD Consortium, we are so grateful to the Nicholoff family for their enduring support towards international efforts aimed at the prevention of adrenal insufficiency in Duchenne muscular dystrophy.' The updated healthcare provider-facing protocol is available for download on PPMD's website here. PPMD will be hosting a webinar on May 30, 2025, at 1:00 PM ET with leading experts to discuss its implementation in clinical practice. Register for the webinar here. PPMD encourages families, caregivers, and healthcare providers to access this vital resource to ensure the safest care for individuals with Duchenne. For more information or to access the PJ Nicholoff Steroid Protocol, visit About Parent Project Muscular Dystrophy Duchenne is a genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne. We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won eight FDA approvals. Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at Follow PPMD on Facebook, Twitter, Instagram, and YouTube. View original content to download multimedia: SOURCE Parent Project Muscular Dystrophy (PPMD)
