Latest news with #MatterofTime
Yahoo
12-06-2025
- Health
- Yahoo
9-Year-Old Girl with Devastating Skin Disorder Lives in Pain: 'I Can't Play on the Playground' (Exclusive)
Zineb Laalej tells PEOPLE exclusively how she cares for daughter Tayma, 9, who has recessive dystrophic Epidermolysis Bullosa It's the most severe form of the rare skin disorder, which is often called "butterfly disease" because it leaves skin as fragile as a butterfly's wings, causing blisters, scarring, and infection "Every kid is beautiful, and some kids are different," Zineb tells PEOPLENine-year-old Tayma loves drawing flowers, playing with her brother, Arsnan, and the color pink. But unlike other kids her age, summer doesn't mean days splashing in a pool or running barefoot outside — it would cause her immense pain, her mom Zineb Laalej tells PEOPLE. 'The weather is hot, the skin is very fragile,' Zineb explains, and Tayma spends most of the summer indoors at their home in Methuen, Mass. A sunburn or a bug bite for Tayma could cause catastrophic pain. Tayma has severe recessive dystrophic EB, the most severe form of Epidermolysis Bullosa, a genetic disorder that causes Tayma's skin to blister and scar. It's the subject of Matter of Time, a new documentary featuring Pearl Jam frontman Eddie Vedder, chronicling he fight to cure the rare but devastating condition. Often called the "butterfly disease," it leaves the skin as fragile as a butterfly's wings. That's why Tayma has to wear special bandages and a thin full-body jumpsuit to protect her skin. As Dr. Diana Reusch, Director of the EB Clinic at UMass Memorial Medical Center in Worcester, Mass. — the only clinic for the disorder in the Northeast — who treats Tayma, tells PEOPLE, 'Every shower and bandage change is exquisitely painful. Every blood draw is terrifying. But she puts on a brave face every time. I am in awe watching her go through a bandage change or medical procedure. She is only 9 years old, but she is a little warrior.' Symptoms of Tayma's EB showed up shortly after birth, when a nurse brought her over to Zineb to breastfeed. Tayma's mouth was suddenly covered in blisters, Zineb tells PEOPLE. 'The nurse went to take her temperature under the arm, and her skin was removed.' Doctors whisked Tayma away to the NICU, where she stayed for 20 days. The new mom, then just 23, says it was 'scary,' spending her days sobbing as she and her husband, Tarik, waited for the news about their daughter's condition. When the family was finally was told it was EB, doctors explained there was nothing that could be done to help Tayma, other than protect her skin from the chronic blistering. Her back has the biggest wound, Zineb says. "The wound is very deep, and it's been seven years. It's not healing." Dr. Reusch explains the roadblocks to relief. 'As of right now, we don't have a treatment that can be used before a skin blister forms, to prevent the skin blisters [or] wounds from forming in the first place. We also don't have a treatment that works from the 'inside out,' " Dr. Reusch explains. There are few medications for EB, and while there are new treatments, 'we are still missing a cure." Tayma sees the doctor every two weeks, she tells PEOPLE. 'Sometimes it's bad. And it is sometimes it hurts,' she says. 'It hurts." When it hurts, she says she goes to her mom. "She just makes it better, and then she wraps it, and then it doesn't hurt anymore." Tayma's form of the disease is so severe, she needs morphine and ibuprofen to manage the pain. Bath time is brutal; creams, surgeries, and skin grafts haven't worked. As her mom explains, they can only cover her skin in Aquaphor and wrap it in bandages. Beyond the pain, EB brings other side effects, Dr. Reush explains: infection, malnutrition, squamous cell carcinoma. Some patients' fingers and toes may fuse from repeated blistering and scarring. "Everyone with EB is so different," she says, explaining that there are different types which range in severity. "Some patients with mild recessive dystrophic EB can play football, whereas other people with severe recessive dystrophic EB will blister from a hug, or rolling over in bed. "There is a serious risk of infection at any age in life for patients with EB," Dr. Reush continues. "There is a lot of variability in lifespan for patients given the variability in disease severity, and we are hopeful for improved lifespan with our new therapies. However, historically, many with severe disease pass by age 30." "Tayma's parents Zineb and Tarik are incredible human beings. They work tirelessly to give the best life they can to Tayma ... take care of her and sit with her on every hard day." But the hardest days, Zineb explains, come when people don't understand why her "social" daughter looks different. "Some kids are different," she says, tearfully, explaining that "Tayma's heart is broken when the kids see [her] and cry." "I know I can't play on the playground," Tayma tells PEOPLE, because the risk of injury is too great.. "On the outside, some kids are different," Zineb says. "Every kid is beautiful, and some kids are different ... every morning when I wake up, she says, 'Mom, give me a hug, give me a kiss.' " "Every day when I talk to Tayma, I say, 'This is strong, this is brave,' " she says. " 'This is my beautiful daughter.' " Never miss a story — sign up for to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories. Read the original article on People
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
Time Out
05-06-2025
- Entertainment
- Time Out
What to see at the 2025 Tribeca Festival
How to choose? That's the welcome dilemma the Tribeca Festival offers us every year, and the 24th edition—which begins on June 4 and runs through June 15—is as packed as ever. Festival programmer Vincent Cassous calls Tribeca 'a bridge between different viewpoints and cultures,' but the fest's famously expansive reach also spans genres, mediums and even—name be damned—neighborhoods. Actually, the lineup is so vast that organizers dropped 'Film' from the festival's original title several years ago. But cinema still remains at the center, with literally hundreds of shorts, features, and documentaries on offer. That said, any Tribeca event is designed to be a full experience; as Cassous says, 'The films don't end with the credits!' In other words, stick around for a second act—which at this fest could include an insightful conversation about the movie you just watched, or a full-on concert from the film's subject. The main exception, sadly, was Wednesday's opening night entry, the intimate biography Billy Joel: And So It Goes. Joel has, unfortunately, had to cancel upcoming appearances while he recuperates from a brain injury. However, this year's program is packed with music docs, and fans of Eddie Vedder (Matter of Time) Billy Idol (Billy Idol Should Be Dead), Becky G (Rebbeca), and De La Soul and Rakim (The Sixth Borough) can expect live performances at the films' premieres. (Planned appearances are listed on the site, but it's worth noting that stars and filmmakers often surprise audiences by popping into secondary screenings as well.) Other documentary subjects who'll remain for post-premiere conversations include Ty Dolla $ign (Still Free TC), members of Metallica (Metallica Saved My Life), and Miley Cyrus and Slick Rick, both of whom will be bringing new visual albums. You'll spot musicians elsewhere too, including behind the camera: Anderson .Paak (K-Pops!), Logic (Paradise Records), and Nora Kirkpatrick of Edward Sharpe and the Magnetic Zeros (A Tree Fell in the Woods) are all making their feature directorial debuts. Demi Lovato is costarring in the drama Tow (though it's Rose Byrne who pulls off the tour de force central performance, about an unhoused woman). And Kid Cudi will be sharing his new short film in a music video program that also includes LL Cool J and Jack White. Another theme that pops up a lot this year is family, both on- and off-screen. Spouses Kyra Sedgwick and Kevin Bacon flirt in the shaggy dramedy The Best You Can, Steve Zahn costars with daughter Audrey in the lovely drama She Dances, and Gideon Grody-Patinkin captures his parents Mandy Patinkin and Kathryn Grody in Seasoned, an expansion of their charmingly bickerish viral videos. Mariska Hargitay explores her Hollywood legacy in the personal doc My Mom Jayne, and you can bring your own crew for the family-oriented premiere of How to Train Your Dragon. Kids will also enjoy the 25th anniversary screenings of Meet the Parents and Best in Show —though you may want to leave them at home for retrospective showings of American Psycho, Casino and Requiem for a Dream. But wait, there's more: You can also catch sneak peeks of shows like The Gilded Age, Godfather of Harlem, and Star Trek: Strange New Worlds. Explore immersive gaming and virtual reality installations. And attend talks with the likes of Lena Dunham and Michelle Buteau, Mark Ronson and Wyclef Jean, Lena Waithe, Sandra Oh and Sam Rockwell. We know, it's a lot. And we haven't even gotten to Marc Maron baring his soul in the documentary Are We Good, the double dose of Dylan O'Brien that broke the internet when his dramedy Twinless was leaked earlier this year, Willem Dafoe and Camila Morrone in Patricia Arquette's biopic Gonzo Girl —well, you can see why senior programmer Liza Domnitz's primary advice for anyone trying to narrow down their options is pretty straightforward: 'Don't panic!' This goes double, btw, for anyone already overwhelmed by decision fatigue: even if your pick is sold out, every event has a rush line, which often allows entry at the very last minute. The Tribeca Festival runs from June 5–June 16. Tickets are available at other than the Beacon Theatre and United Palace. The Rush system functions as a standby line that will form at the venue approximately one hour prior to scheduled start time. Admittance is based on availability and will begin roughly 10 minutes prior to program start time.
CNN
18-04-2025
- Entertainment
- CNN
Eddie Vedder's quest to help cure a rare disease subject of new documentary
'Matter of Time,' a documentary featuring Pearl Jam frontman Eddie Vedder that is set to debut this summer at the Tribeca Film Festival, is being billed as much more than a concert film – it's a rallying cry for action. A string of 2023 solo concerts in Seattle are the backdrop for the film, which chronicles Vedder's efforts to raise funds for clinical research for Epidermolysis Bullosa, a rare genetic skin disease that causes blisters and skin erosion and predominantly affects children. Proceeds from those concerts were directed to EB Research Partnership (EBRP), a foundation co-founded by Vedder and his wife Jill, along with a group of families. The organization's goal is to find a cure for EB by 2030. The film, according to a news release, 'blends powerful music with the poignant, real-life stories of patients, families, researchers, and thought leaders, revealing how determination and innovation are paving the way toward a cure.' 'We are so grateful to the music community, and the entire team who made these concerts and this film possible,' said Eddie Vedder in a statement, first provided to CNN. 'This is a story of hope, resilience, and the power of community.' Jill Vedder, chairwoman of EBRP, added: 'It's amazing to witness how far we've come. Epidermolysis Bullosa may be rare, but through the tireless work of our community, our message is reaching more people than ever. This is more than awareness; it's an urgent push to cure EB by 2030, and together, I know we can make it happen.' The couple's involvement stems from a personal connection. A family friend's son was born with EB and it inspired them to take action. 'The concert wasn't just about music; it was about amplifying the voices of a small but mighty community that refuses to let this disease define them,' said Matt Finlin, the film's director. 'Through the Vedders' dedication and the efforts of everyone involved, this documentary demonstrates to the world how, even against all odds, real change is within reach.' Founded in 2010, EBRP has had a noted impact on research into EB using a so-called venture philanthropy model that essentially aims to create a recurring donation stream by applying some of the principles of investing. Using this model, the foundation has funded 160 research projects and helped accelerate the growth clinical trials, with over 50 now in progress, up from two when the organization started, according to the group's website. Michael Hund, CEO of EB Research Partnership, said 'Matter of Time' 'highlights the real scientific progress that is happening right now.' 'We are showing the world how rare diseases like EB can be cured, and we hope to take our model to thousands of other rare diseases,' Hund siad. The documentary is produced by Door Knocker Media in association with Vitalogy Foundation. Karen Barzilay is also a producer. It is set to premiere at the 24th Tribeca Festival on Thursday, June 12, per a lineup announced on Wednesday.
CNN
17-04-2025
- Entertainment
- CNN
Eddie Vedder's quest to help cure a rare disease subject of new documentary
'Matter of Time,' a documentary featuring Pearl Jam frontman Eddie Vedder that is set to debut this summer at the Tribeca Film Festival, is being billed as much more than a concert film – it's a rallying cry for action. A string of 2023 solo concerts in Seattle are the backdrop for the film, which chronicles Vedder's efforts to raise funds for clinical research for Epidermolysis Bullosa, a rare genetic skin disease that causes blisters and skin erosion and predominantly affects children. Proceeds from those concerts were directed to EB Research Partnership (EBRP), a foundation co-founded by Vedder and his wife Jill, along with a group of families. The organization's goal is to find a cure for EB by 2030. The film, according to a news release, 'blends powerful music with the poignant, real-life stories of patients, families, researchers, and thought leaders, revealing how determination and innovation are paving the way toward a cure.' 'We are so grateful to the music community, and the entire team who made these concerts and this film possible,' said Eddie Vedder in a statement, first provided to CNN. 'This is a story of hope, resilience, and the power of community.' Jill Vedder, chairwoman of EBRP, added: 'It's amazing to witness how far we've come. Epidermolysis Bullosa may be rare, but through the tireless work of our community, our message is reaching more people than ever. This is more than awareness; it's an urgent push to cure EB by 2030, and together, I know we can make it happen.' The couple's involvement stems from a personal connection. A family friend's son was born with EB and it inspired them to take action. 'The concert wasn't just about music; it was about amplifying the voices of a small but mighty community that refuses to let this disease define them,' said Finlin said. 'Through the Vedders' dedication and the efforts of everyone involved, this documentary demonstrates to the world how, even against all odds, real change is within reach.' Founded in 2010, EBRP has had a noted impact on research into EB using a so-called venture philanthropy model that essentially aims to create a recurring donation stream by applying some of the principles of investing. Using this model, the foundation has funded 160 research projects and helped accelerate the growth clinical trials, with over 50 now in progress, up from two when the organization started, according to the group's website. Michael Hund, CEO of EB Research Partnership, said 'Matter of Time' 'highlights the real scientific progress that is happening right now.' 'We are showing the world how rare diseases like EB can be cured, and we hope to take our model to thousands of other rare diseases,' Hund siad. The documentary is produced by Door Knocker Media in association with Vitalogy Foundation. Karen Barzilay is also a producer. It is set to premiere at the 24th Tribeca Festival on Thursday, June 12, per a lineup announced on Wednesday.
