Latest news with #EBRP
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.
Miami Herald
09-04-2025
- Health
- Miami Herald
TikToker Hannah Campbell loses 10-month-old daughter to rare skin disorder
A TikTok influencer is urging her followers to fight for a cure after losing her 10-month-old daughter to a terminal illness. On April 8, Hannah Campbell — who gave birth to Elliana Rose in May 2024 — shared a TikTok video in memory of her daughter, who died the night before. 'Our sweet girl Elliana Rose lost her battle last night. She passed peacefully, wrapped in love,' Campbell wrote in the video's caption. 'I don't know what to do with myself today. I'm heartbroken, and I'm angry.' Elliana Rose was diagnosed with a rare and highly severe condition called Junctional Epidermolysis Bullosa (JEB) at 2 weeks old. Campbell has documented her daughter's battle on TikTok since September to help raise awareness for the disease. 'No child should have to endure what she did. EB stole her from us. Let's fight for a cure so no other family has to feel this. Thank you for loving her with us,' Campbell added in the caption. According to DermNet, epidermolysis bullosa (EB) is 'a group of inherited diseases that are characterised by blistering lesions on the skin and mucous membranes.' The painful blisters can appear anywhere on the body and form from the slightest touch. It affects both the external and internal well-being of the individual. 'An estimated 1 in 50,000 people in the United States' have EB, according to Cleveland Clinic. While there is currently no cure for the disease, some patients can see their condition improve with age. In a March TikTok video explaining her daughter's condition, Campbell wrote that the disease 'causes daily pain, wounds and lifelong challenges.' She noted that her daughter requires 'constant wound care, special medical supplies and adaptive equipment to keep her comfortable and safe,' per E! News. 'There is no cure, but there is hope,' Campbell added. 'Every child with EB deserves a future without pain. Spreading awareness leads to research, treatments and one day a cure.' Campbell's latest update came just a few days after posting a video explaining that her daughter 'hasn't opened her beautiful eyes in 24 hours.' In the caption, Campbell added that Elliana was 'still with us, but her body is tired.' 'She hasn't opened her eyes, eaten, and can hardly cry. We're holding her close and loving her through every breath,' she wrote. In addition to using her TikTok to spread awareness to her more than 700,000 followers, Campbell founded Elliana's Hope for Healing — a fundraiser that hopes to find a cure for EB by 2030. On its official website, Campbell wrote that it was 'unlikely Elliana will live beyond her first year.' 'This fundraiser is being organized with the aim of providing support to Elliana and other babies facing similar health conditions,' Campbell wrote on the website. Campbell created the fundraiser with EB Research Partnership (EBRP), which was co-founded in 2010 by Jill and Eddie Vedder — the frontman for Pearl Jam — after their friend's son was diagnosed with EB. According to EBRP, Elliana was one of more than 400 million children and adults battling EB. 'Over the last decade, EBRP has made remarkable strides, including helping to accelerate the first two EB treatments FDA approved in 2023,' the nonprofit wrote on its website.
