Latest news with #EB
TimesLIVE
09-07-2025
- Business
- TimesLIVE
ICT technician at SALGBC
The South African Local Government Bargaining Council (SALGBC) has the following vacancy at its head office in Berea, Durban, KwaZulu-Natal: ICT technician The ideal applicant would be one with a good technical acumen to control and execute activities associated with providing comprehensive end user support to local and remote users, maintaining acceptable levels of performance of desktop and network environments, and database design, development and maintenance. Salary: R49,515.68 per month (TCTC — TK 12) Key performance areas: Installation, maintenance and repair of hardware and software systems. Provision of technical support and training to users. Ensuring network security and privacy. Management of LAN and WAN to ensure optimal performance and connectivity. Performing data backups and recovery. Ensuring the security of networks and computer systems. Implementing procedures to protect sensitive data and ensure privacy compliance. SharePoint development and customisation. Software and applications development. Website development and maintenance. Essential job requirements: Matric and Code EB driving licence. Computer science degree or equivalent/National Higher Diploma in information technology. Knowledge of C#, MS SQL Server, JavaScript and HTML. Knowledge of MS Reporting Services, MS Active Directory and MS Exchange Server. Minimum of three years' relevant experience. Ability to handle high levels of pressure with emphasis on planning/organising. Applications and closing date: E-mail your application, addressed to the deputy general secretary to cherelle@ by no later than 11.59pm on July 13 2025. Apply with A SINGLE ATTACHMENT containing your detailed CV and two letters of reference, as well as copies of your ID document, driver's licence, matric certificate and tertiary qualifications, in that order. DO NOT SUBMIT MULTIPLE ATTACHMENTS. You must indicate where you read this advertisement. Note: Preference will be given to applicants from the most underrepresented race groups in terms of the SALGBC's Employment Equity Policy. Black males and females are encouraged to apply. This is a readvertisement. Please do not apply again if you have applied previously. The advertised remuneration includes all benefits payable. Correspondence will be limited to shortlisted candidates only. If you are not contacted within 30 days, please consider your application as unsuccessful.
Daily Mirror
02-07-2025
- Politics
- Daily Mirror
'Disability benefits are our lifeline. Taking it away will end in tragedy'
Millions of people who depend on disability benefits were watching yesterday's Commons vote on welfare reform closely. Here six people talk give their verdict's on the government plans. The Government's welfare reforms eventually got over the line after a tense day in the House of Commons yesterday. But dozens of Labour MPs refused to back the bill - a sign of the deep unease within the party about how the changes will affect disabled people and concerns about a 'two tier' benefits system. Others watching the proceedings closely were those who depend on the state for support as they cope with serious illness and disabilities. While the rebellion forced PM Keir Starmer to reverse some cuts to universal credit and protect current claimants of personal independence payment (Pip) from stricter eligibility rules, many disabled people are still fearful about the future. Here six of them give their verdicts... Vie's story Confidence coach and children's book author Vie Portland, 54, from Hampshire, needs a stick to walk and suffers from multiple conditions including Epidermolysis Bullosa (EB) a group of rare genetic skin conditions causing extra fragile skin that blisters and tears easily; degenerative spinal disease and ADHD. She receives PIP, which covers treatments outside the NHS, special underwear and clothes because of her fragile skin, dressings and transport. She tells The Mirror: 'News that MPs aren't voting on PIP yet could be a victory for common sense, but I worry it could also be an attempt to put making a decision off and to distract us with something else. It does feel very messy. "Everyone is so at risk from going from non-disabled to disabled, due to something like an accident or a cancer diagnosis, and I am concerned for new claimants. 'What about the young people that will now not qualify for PIP, so will not be able to afford to go to university because they won't have the PIP to cover the additional costs we, as disabled people, have to pay? 'I have been a Labour supporter all of my life, yet this current government disappoints and appalls me, so I will not be voting for them until their policies return to ones that are true Labour policies - ones that don't just support privileged people.' Dena's story Dena Britcliffe, 32, lives in Kent, with partner Max, 32, a full-time carer and their five children: Mia, 13, Teddy, 12, Harlow, 8, Franky, 5 and Hallie-Rose, 4. Dena has functional neurological disorder (FND), fibromyalgia and suspected Ehlers Danlos syndromes, causing hypermobility and dislocations. Frankie has global development delay, autism and pathological demand avoidance (PDA) and is currently unable to cope with school. Dena, who receives PIP and Universal Credit, says: 'Another u-turn makes it so much more confusing for the disabled and vulnerable. Surely they should pull the bill completely until it is a better thought out plan with real life people taken into consideration. 'PIP is my lifeline – I use the financial help to pay for aids and equipment including a wheelchair and walking frame and travel to hospital appointments in London. Life costs a lot more when you are disabled. 'The new points system worries me. Assessors are not doctors, they don't have medical training and the new points system will be harsher with even stricter targets because they want to keep the costs down. The Government has treated disabled families with contempt – they have no idea what it's like to be disabled. If I didn't have PIP I wouldn't be able to leave the house, I wouldn't able to pay for all our food. 'We need a whole Government overhaul. The Government is disregarding thousands of disabled people.' Lianne's story Lianne White, 46, from Hampshire, is blind and took four years to get PIP, finally being awarded it after a tribunal. She says: ''What just happened in Parliament makes no sense. Their own MPs are telling them to pull the bill, yet they're still voting on it with none of the promised so-called concessions were an absolute joke. 'Lots of people use PIP to buy mobility aids so that they can stay in work – stripping PIP will do the opposite to what the government wants to achieve. It's going to screw up a lot of lives. "When you are blind you rely on voice operated devices and specialist computers but these are all very expensive – even second hand they cost £2,000. I can't use buses on my own – I have to use taxis if I'm by myself and they are very expensive and PIP helps towards this cost. "It's really hard to get PIP – I applied in 2021 and was declined – I appealed and it went to tribunal. I had to wait four years! "The Government is discriminating against disabled people. They are gaslighting and just trying to appease the rebel MPs. I think people will be driven to suicide if they lose PIP.' Georgia's story Georgia Bondy, 30, from East London is secretary of the Disabled People's Organisations (DPO) Forum England. She has Multiple Sclerosis and Ehlers Danlos syndrome and is often bedbound, but was refused PIP as her assessor didn't feel her condition was severe enough. She says: 'It's already an incredibly hostile system for disabled people and the Government is proposing to make it even harsher. The narrative being pedalled out is that disabled people are asking for too much, are too greedy, don't want to work.. but it's really difficult to get PIP. When I applied for PIP I was bedbound and having to crawl to the bathroom, my joints were dislocating and I was passing out. But I was ruled not eligible. 'I have very little faith that any scheme in the future. People are saying the Government has done a u-turn but it's not a u-turn, it's just to calm the rebel MPs down so they are back on side. What the Government is proposing is to damn our children to a future where many of them will be unable to buy food or pay rent if they become disabled.' Abrigail's story University student Abigail Holly, 22, from Swansea was diagnosed with cancer in 2020 – aged 16. She says PIP has been her lifeline, explaining: 'I was in my first year of college when I was diagnosed with a tumour in my finger. I had two lots of surgery to remove the tumour and had no movement in my hands for weeks. I was out of college for months. 'My life completely stopped. PIP allowed me to keep my head above the water – without it I'd have no money to get to the hospital for appointments, to buy food. It was the only thing allowing me to continue living, it was a complete lifeline. 'It's hard to fully comment right now on what the government's doing, as they're not discussing the PIP changes as such. But it's making me wonder, why aren't they? Is it a good thing or a bad thing? It's very strange and worrying at the same time.' Jamie's story Remedial therapist Jamie McCormack, 53, from Surrey, is deaf and uses a wheelchair after being hit by a car. He receives PIP, which helps with costs like hydrotherapy, an assisted trike and pain management. He says: 'After a weekend of chaos & non concessions, I'm not surprised that Starmer was forced into an inevitable last minute climbdown. The concessions are chaotic and confusing. 'What happens if you lose PIP and you have to reapply? You shouldn't be at the mercy of a decision-making assessor. 'Why is the Government putting people through all this, rather than championing disabled lives? They could do so much better.'
Irish Independent
01-07-2025
- Health
- Irish Independent
Kerry man abseils off Croke park for ‘butterfly skin' charity – ‘My brain was screaming ‘what are you doing?'
People living with EB are missing the essential proteins that bind the skin's layers together, so any minor friction, movement, or trauma causes it to break, tear, and blister. The skin is as fragile as a butterfly wing. James has long been a supporter and advocate for the Debra charity locally and so it was no surprise to hear that he had put his hand up to take part in Debra's Abseil Challenge 2025. Every single euro raised by James will go on to have a direct impact helping Debra to provide essential care, fund groundbreaking research, and campaign for better treatments and support for families facing the unimaginable. Funds are also allocated for research into more effective treatments than are currently available, mostly raised by volunteers. Speaking to The Kerryman after the stunt, James said that it was a mixture of nerves and excitement as he stood there on the edge, ready to drop off. "When they say 'let go now', everything in your head is saying 'you bloody idiot, what are you doing?!'. Once you're hanging there in the hair though, it's totally, totally brilliant. I'd highly recommend it to anyone,' he said. "Everything was so safe, you do all the prep work and there's no danger whatsoever unless you decide to do something very stupid such as undo the harness,' he laughed. As for being such a passionate advocate for Debra Ireland, he said that it's a charity that because of how severe and traumatising the effects of the condition can be for both the person with it and their families, it's a cause that deserves all the support it can get. "There's no cure for EB. The only treatment for it is to wrap people up in bandages and even this has consequences. Taking off the bandages can literally rip the person's skin off which as you can imagine, must be extremely painful. If you're a parent of a child going through this, just imagine how tough it must be for them so that's why it's so important to make sure the families are looked after as well,' he said. As well as this, he said that the people behind the scenes of the charity are just amazing. ADVERTISEMENT "It's not just a job for them, it's something more. They are so passionate about it,' he said. Sadly for James, he joked that he wasn't able to hang around up above Croke Park long enough to get a bird's eye view of Kerry's epic win against Armagh on Sunday. Although he joked that he might have gotten too absorbed in the drama of the game and would have forgotten to hold on to the rope! "I am so grateful for all the kind support and vital donations to this event. As always, people are very generous to good causes of which there are many,' added James, speaking on the success of his fundraiser. The donation page will stay open for a few more days if anyone would like to make a contribution which would be gratefully accepted at Further details on EB and the supports available for it can be found on the Debra Ireland website.
RTÉ News
23-06-2025
- Entertainment
- RTÉ News
Ireland's longest-surviving person with EB receives 2,000 messages ahead of 41st birthday
Ireland's longest-surviving person battling the most severe type of the skin condition epidermolysis bullosa, also known as Butterfly Skin, has received 2,000 birthday messages ahead of her birthday this week. Emma Fogarty, from Abbeyleix Co Laois, celebrates her 41st birthday on Wednesday, but said she is also celebrating beating the current life expectancy for recessive dystrophic EB, which is 30 to 35 years, by yet another year. "I fought to go to college, I fought to live independently, I fought to learn to drive, I fought cancer twice, I fought to get to 40 - I'm still fighting," she said. A birthday message from a well-wisher, one of over 2,000 to be compiled in a book, said: "You are a powerhouse - an inspiration in how you push through to raise awareness despite a huge cost to your own health. "I don't know how you have the strength but wherever you derive it from - I hope it continues to sustain you. Happy birthday." Last October, Ms Fogarty marked her 40th birthday by taking part in the Irish Life Dublin Marathon alongside her close friend actor Colin Farrell, who ran the entire event and pushed her for the final 4km. "Some moments stay with you forever. Crossing the finish line at the Irish Life Dublin Marathon is one of them," she said. "I feel happy whenever I think about it. It's a great memory to have." The friends originally hoped they would raise €400,000 for Debra, the national charity helping people living in Ireland with the rare skin condition and ultimately brought in almost €1 million. Funds raised during 'Emma's Run to 40' campaign are being used for pioneering research and vital and bespoke support for everyone with EB in Ireland.
Yahoo
11-06-2025
- Entertainment
- Yahoo
Eddie Vedder Raises Awareness for Rare Disease in New Docu Clip
Eddie Vedder and his wife Jill share why they've become so heavily involved in the Epidermolysis Bullosa (EB) community in an exclusive clip from Matter of Time, a new documentary about the Pearl Jam singer and his efforts to raise money and awareness for those suffering from the rare genetic disease. In the clip, Jill Vedder reveals that she first learned about EB when the child of one of their friends was diagnosed with the disease. 'We were just like, 'This is the most crazy, brutal, intense thing I've ever seen,' and what can we do?' she says. More from Rolling Stone MTV's the State Look Back on Early Years in New Documentary: 'It Was Intense in Every Way' New Doc Explores How Julia Sweeney's 'SNL' Favorite Pat Became a Complex Nonbinary Icon USC's SoCal VoCals Are Pitch Perfect in 'Just Sing' Documentary Trailer ''Okay, maybe we can talk about this, and just start small and see what happens.' I see people on the street or when I go to shows when they're playing and there's always an awesome Pearl Jam fan that will come up to me and say, 'My god, I love what you guys are doing for the kids with EB.'' Matter of Time, which is premiering at the Tribeca Film Festival, is set against the backdrop of Vedder's Seattle benefit show in 2023 to raise funds for the disease, and features personal stories from parents and young patients impacted by the disease. 'The closer you get to this community and the more you understand it, you cannot escape how difficult the challenges are for these families,' Eddie Vedder says in the clip. 'We've had to clear some hurdles already that are examples of why you can have faith and why you can have hope, but the tricky part is patience.' Eddie continued, 'If raising funds and raising awareness, if those things are able to fuel the process, and the scientific end of finding a cure and how to apply it. It feels like just a matter of time.' (The film shares its title with Vedder's 2020 song of the same name, a track he wrote in tribute to 'everyone worldwide afflicted with EB.') In addition to Vedder's music, Matter of Time — directed by Matt Finlin and executive produced by Jill Vedder — also features an original score by Broken Social Scene. 'Eddie's presence is in every frame, whether he's physically there or not. His leadership, his love for Jill and their dedication to the EB community, his relentless belief that this can be cured — it shaped the spirit of this film,' Finlin tells Rolling Stone. 'He doesn't just fundraise; he instills purpose. He makes the world stop and listen, then act. I think the real measure of Eddie's influence isn't just what you see onscreen, it's in what you feel after watching it: that we're all part of this, that we must be part of this. 'This is a story of rare disease, but even more so, it's a story of rare community,' Finlin adds. 'A group of people who've decided that this isn't just about surviving — it's about treatments, it's about curing. It's about taking big swings. And they've backed that hope with action. Michael Hund, the CEO of EB Research Partnership has a great quote in the film: 'All of us in this community that have the profound honor of serving those that battle EB, our duty is to give them something to march to, that illuminates an end game.' Matter of Time is a love letter to that fight.' As for Broken Social Scene's score, Finlin said of working with the band's frontman Kevin Drew, 'When I told him about the film, he simply asked the band, 'Are you in?' And they were. They gave their time, their talent, and created something truly special. Their music sits alongside Eddie's performances in a way that feels seamless. The emotional current they bring to the film is something I'm deeply proud of. Honestly, I'd love to hear more of it.' Matter of Time will premiere Thursday at the Tribeca Film Festival; the opening screening will also feature an intimate acoustic performance by the Pearl Jam singer. { pmcCnx({ settings: { plugins: { pmcAtlasMG: { iabPlcmt: 1, }, pmcCnx: { singleAutoPlay: 'auto' } } }, playerId: "d762a038-c1a2-4e6c-969e-b2f1c9ec6f8a", mediaId: "21101e80-0f42-4df6-80d7-29f307bf559c", }).render("connatix_player_21101e80-0f42-4df6-80d7-29f307bf559c_2"); }); Best of Rolling Stone Sly and the Family Stone: 20 Essential Songs The 50 Greatest Eminem Songs All 274 of Taylor Swift's Songs, Ranked
