Latest news with #retinitisPigmentosa
CBC
02-07-2025
- Health
- CBC
Why this teen created an app that screens for eye disease
Harry Nickerson was diagnosed with retinitis pigmentosa as a kid, a condition that left him legally blind. The CBC's Tom Murphy sat down with Nickerson to talk about his prototype, which could help with early diagnosis.
Associated Press
05-06-2025
- Business
- Associated Press
Ocugen, Inc. Announces Signing of Binding Term Sheet for the License of OCU400 Modifier Gene Therapy for Retinitis Pigmentosa in Korea
MALVERN, Pa., June 05, 2025 (GLOBE NEWSWIRE) -- Ocugen, Inc. ('Ocugen' or the 'Company') (NASDAQ: OCGN), a pioneering biotechnology leader in gene therapies for blindness diseases, today announced the signing of a binding term sheet to negotiate and enter into a licensing agreement with a well-established leader in the pharmaceutical and healthcare sector in Korea, for exclusive Korean rights to OCU400—Ocugen's novel modifier gene therapy for retinitis pigmentosa (RP). Pursuant to the term sheet, under the license agreement Ocugen will receive upfront license fees and near-term development milestones equaling up to $11 million. The Company will be entitled to sales milestones of $1 million for every $15 million of net sales in Korea in addition to a royalty of 25% on net sales of OCU400 generated by Ocugen's partner. Additionally, Ocugen will manufacture commercial supply of OCU400 under terms of a supply agreement. There are an estimated 15,000 individuals in the Republic of Korea with RP. OCU400 provides the opportunity for our partner to help thousands of patients and become a leader in gene therapy in Korea. 'This regional licensing agreement is aligned with our business development strategy to partner with well-established companies in their respective countries and regions—leveraging their networks and know-how to treat as many RP patients as possible,' said Dr. Shankar Musunuri, Chairman, CEO, and Co-founder of Ocugen. 'A regional approach preserves Ocugen's rights to larger geographies to maximize total patient reach while also generating return for our shareholders.' Additional details will be available once the definitive agreement between the parties is executed, which is expected to occur within the next 60 days. Ocugen is currently advancing OCU400 through Phase 3 clinical development with a target Biologics License Application filing of mid-2026. About Ocugen, Inc. Ocugen, Inc. is a biotechnology company focused on discovering, developing, and commercializing novel gene therapies to address major blindness diseases and offer hope for patients across the globe. We are making an impact on patient's lives through courageous innovation—forging new scientific paths that harness our unique intellectual and human capital. Our breakthrough modifier gene therapy platform has the potential to address significant unmet medical need for large patient populations through our gene-agnostic approach. Discover more at and follow us on X and LinkedIn. Cautionary Note on Forward-Looking Statements Thispressreleasecontainsforward-lookingstatementswithinthemeaningofThePrivateSecuritiesLitigationReformActof1995,including,butnot limited to, statements regarding the terms of the definitive license and timing of a definitive agreement or if a definitive agreement will be executed at all or the anticipated benefits to Ocugen of the definitive license agreement, qualitative assessments of available data, potential benefits, expectations for ongoing clinical trials, anticipated regulatory filings and anticipated development timelines, 'believes,' 'potential,' 'proposed,' 'continue,' 'estimates,' 'anticipates,' 'expects,' 'plans,' 'intends,' 'may,' 'could,' 'might,' 'will,' 'should,'or other words that convey uncertainty of future events or outcomes to identify these forward-looking statements. Such statements are subject to numerous important factors, risks, and uncertainties that may cause actual events or results to differ materially from our current expectations, including,butnotlimitedto, Contact: Tiffany Hamilton AVP, Head of Communications [email protected]
BBC News
16-05-2025
- Health
- BBC News
Blind personal trainer says guide dog is 'life-enhancing'
A personal trainer who lost nearly all his vision at 41 years old says receiving a guide dog has been "life-enhancing".Mark Long, 43, from Gloucestershire, was diagnosed with retinitis pigmentosa aged 12, but his conditions worsened in has now adapted to sight loss and launched his own gym at home, in Stonehouse, so he can work alongside his guide dog, Mary."For me to be able to have that little bit of independence again is encouraging me to be a better person," he said. Mr Long said he started experiencing issues such as blurry vision and the sun seeming "really bright" aged 40, and months later on optician told him his condition was becoming "very aggressive very quickly".He said: "Initially [the diagnosis] was just horrific. "I didn't know what to do. I was trying to keep everything together for my family and making sure they were positive."The personal trainer said he had "never given up on anything" and his family knew he would " put up the best kind of fight". "But ultimately, I can't win against it," he explained."It's only going to deteriorate. It's been a lot of soul searching, a lot of reflection, and trying to work out new ways of dealing with it. "But it's a part of me, I've got to accept it. It's definitely not the end, it's the start of something new." After building his new gym, Mr Long told the BBC he wanted to inspire other people to making positive changes in their lives."I didn't have anyone I could go to, I didn't have anybody where it was 'I think they're really inspiring'," he said."People have done loads cooler stuff than me and are really achieving with worst situations."There are really bad days, but you can reflect on that and move forward."Mr Long was partnered with Mary through the charity Guide Dogs. He said she was "involved with every aspect" of his life."She gave me purpose again. I'd lost confidence, but she helped me regain my independence," he added."I can go out and about, and not hold back, because I've got Mary by my side."
Daily Mail
12-05-2025
- Entertainment
- Daily Mail
Scandal-hit Strictly Come Dancing scoops a BAFTA TV Award for Chris McCausland's 'blackout' waltz as triumphant Dianne Buswell calls it a 'story of hope and determination'
If winning under a cloud of controversy wasn't enough, Dianne Buswell and Chris McCausland stirred the proverbial pot on Sunday evening by winning Best TV Moment at the TV BAFTA Awards. Professional dancer Buswell was given short odds of winning the Strictly Come Dancing Glitter Ball after being paired with comedian McCausland, 47, who lost his sight at the age of 22 due to genetic condition retinitis pigmentosa. But a series of impressive performances, consistently high scores and McCausland's self-deprecating brand of humour culminated in the pair defying critics and lifting the trophy after beating JB Gill, Tasha Ghouri and Sarah Hadland in the series 22 finale. In front of a full house at London's Royal Festival Hall on Sunday, the feat claimed further accolades by claiming a TV BAFTA - just months after Strictly Come Dancing battled back from a string of very public controversies. The show won Best TV Moment for McCausland's moving 'blackout' waltz to You'll Never Walk Alone - choreographed to highlight his visual impairment and echo a similar routine performed by deaf contestant Rose Ayling-Ellis in 2021. While the comic was absent, a triumphant Buswell, 36, was on hand to personally accept the award and show it off backstage in the winners room. Strictly earned the accolade after beating pivotal scenes from Bridgerton, Gavin & Stacey, Mr. Bates vs The Post Office, Rivals and The Traitors to the award. Australian dancer Buswell was accompanied by her long-term boyfriend and former Strictly Come Dancing partner Joe Sugg as they greeted photographers on the red carpet earlier that night. In September, McCausland won plaudits from Strictly viewers by paying tribute to Liverpool - his home city - with a solo waltz before quietly asking Buswell: 'Did I do OK?' It was a rare moment of sunshine for the show after it pushed ahead with its 22nd series despite being hit with a wave of unsavoury allegations that began in May 2024 with fan favourite Giovanni Pernice accused of backstage bullying. Pernice quit the show and faced an internal probe that later exonerated him of any wrongdoing after former celebrity partner Amanda Abbington claimed she was left with post traumatic stress disorder as a result of his 'militant approach to training '. A source told The Sun at the time: 'Gio feels the scrutiny on him has become too much and now is the time to make a fresh start. 'He wants to focus on other TV projects, and feels he's achieved all he can on Strictly, having won the trophy back in 2021 and reaching the final an unprecedented four times. 'He remains adamant he's done nothing wrong other than being a hard taskmaster, but knows his style of training isn't to everyone's liking - especially in this day and age.' Worse would follow, with Graziano di Prima fired by BBC bosses over claims of 'physically and verbally abusive' behaviour towards celebrity dance partner Zara McDermott. Addressing his exit from the show, a 'devastated' Graziano later wrote on Instagram: 'I deeply regret the events that led to my departure from Strictly. 'My intense passion and determination to win might have affected my training regime. 'While respecting the BBC HR process, I acknowledge it's only right for the sake of the show that I step away. I am saddened that I wasn't allowed to offer a quote to the online news stories, and I take on board the sensitivity of the situation. 'There's more to this story that I am unable to discuss at this time, but I am committed to being strong for my family and friends. I wish the Strictly family nothing but success in the future.' Worse would follow, with Graziano di Prima fired by BBC bosses over claims of 'physically and verbally abusive' behaviour towards celebrity dance partner Zara McDermott Overlooking the controversy as she accepted the award on behalf of McCausland on Sunday evening, Buswell said: 'In one minute and 30 seconds of a dance, I feel like this told such a story. 'A story of hope, determination, resilience and vulnerability. 'This moment meant so much to the both of us, so I'm just so thrilled that we have this.' Ending with a comedic message from her former dance partner, she added: 'Chris did have something he wanted me to say, and that is "after 22 years in comedy, he wins a Bafta for dancing"'.
Press and Journal
23-04-2025
- Health
- Press and Journal
Fraserburgh families devastated over disabled daycare cuts - saying changes will 'destroy' their loved ones
Families of disabled people who could be affected by drastic cuts to daycare services in Fraserburgh have slammed the proposals. Around 40 people turned up to a public meeting on Thursday – that was only arranged a day before – to vent their frustrations and anger at planned cuts to Aberdeenshire daycare centres. Fraserburgh Day Opportunities, which is located in the Robertson Road Resource Centre in the Buchan town, provides a service to adults with learning disabilities in Fraserburgh and the surrounding areas. Activities include baking, cooking, singing, swimming at Fraserburgh Leisure Centre and trampolining, amongst others. However, some of the services are now under threat as Aberdeenshire Health and Social Care Partnership looks to make cuts to services in order to save millions of pounds, with a decision to be made by the integrated joint board next month. Attending the meeting – held at the leisure centre – was Nicola McNabb, whose 55-year-old sister Isobel Ann has been attending the Robertson Road hub for 34 years, and is having her days cut from five to three. 'Robertson Road is all she knows, it's her work,' she told The Press and Journal. Her sister, who has Laurence-Moon-Bardet-Biedl syndrome and retinitis Pigmentosa – meaning she is completely blind – as well as diabetes and kidney failure, has been going there for longer than all of the staff at Fraserburgh Day Opportunities Nicola said: 'The slightest thing can disrupt my sister's whole day. She thinks it's all her fault, she doesn't understand she's not to blame.' The review of day care services could mean the number of spaces available will be reduced, with those with a 'profound and multiple learning disability' being prioritised over others and there being a focus on 'care in the community'. The cost of day services will also increase, going from £48 to £148 per day. Nicola thinks the disabled community are being scapegoated by Aberdeenshire Council. 'They're an easy target,' she said. At the beginning of the process, it was confirmed that Isobel Ann did not have a space, but this changed after a letter from her doctor confirmed she had 'profound disabilities' and one from her kidney specialist. Regarding the latter, Nicola told The P&J: 'It said on it that she needs this centre to get out and about because it will physically kill her if she doesn't. 'She's in kidney failure as it is, she needs to be active, she needs to be stimulated and she won't get that at home.' Isobel Ann used to get four days of social time, where a carer picked her up at 3pm daily for two hours. They would go shopping, which would give her 'a purpose', however, that has now stopped. 'She's back to crying and thinking that she's doing something wrong and that the carers don't want to take her anymore,' Nicola said. Isobel Ann's sibling said that Fraserburgh Day Opportunities is 'all she knows' and the things they do are 'honestly unbelievable', with her being aghast at the proposals. Denise Macdonald's 28-year-old sister-in-law Ellie, who has Down's syndrome and a leaking heart valve, also attends the Robertson Road centre. Her mum passed away a couple of years ago, and Denise's brother John is now her legal guardian. Denise gave up her two jobs at Aberdeenshire Council to care of Ellie to let John work full-time. Ellie attends the centre five days a week and has been there for a 'lot of years'. For Ellie it's a job Monday to Friday and a purpose for her every morning,' her sister-in-law told The P&J. Denise said they will never put her into care as 'she's part of the family'. She admitted that if she did not get to continue going to Fraserburgh Day Opportunities, 'it would destroy her'. Ultimately, Ellie's carer believes the cuts are nothing but a 'cop out'. Alison Duthie, whose 19-year-old son Kristopher attends Robertson Road four days a week told The P&J that she is 'absolutely devastated with the cuts'. Kristopher, who has a severe living disability, is non-verbal, on a feeding tube and has a 'bad chest', has only been attending since August last year. He has 'absolutely loved it' according to his mum. Although his ongoing place at the centre has been confirmed, Alison is worried what the future will hold. 'If Kristopher didn't get Robertson Road, I am sure his mental health would definitely go down. I would be the same. 'That five hours a day is my time to do my cleaning or go out, or socialising. If I didn't have that time, I don't know how it would be. 'When Kristopher's there, that's my time.' Alison does not think the decision-makers know what it is like to look after a disabled person. 'It's 24 hours a day, seven days a week, even when you're sleeping. I don't even get a night's sleep,' she said. And despite her son getting a place, she thinks it is 'discrimination' that some will not. 'It's sheer discrimination what they're doing, because they're picking at their disability. 'They're all disabled, that's why they're there and why they can't work.' North Aberdeenshire partnership manager for Aberdeen Health and Social Care Partnership, Jeff Shaw said: 'I understand and can empathise with the concerns of families, however, I can reassure them that people with an assessed need will continue to receive support. 'Those with less profound needs may no longer meet the criteria to attend our day services and will be supported to access other services. 'No one will find their attendance at one of our day services stopped overnight. We will work with service users and families to ensure they get the right support to meet their needs. 'I understand that some people may be concerned about the increase in our fees. I can reassure everyone that we will work to ensure that there is no detriment to service users, due to the cost increase, at this time.' Another meeting will be held at Fraserburgh Leisure Centre on May 1 between 10am until 12pm, with a capacity of 200 being able to be accommodated for. Read more: All the Aberdeenshire health charges that could rocket amid savings plan
