Pearl Jam frontman Eddie Vedder recently discussed his modern Netflix documentary, “Matter of Time,” and the urgent need for research into epidermolysis bullosa (EB), a rare and devastating genetic disorder, during an appearance on the Howard Stern Display. The film, which blends concert footage with the stories of families affected by EB, has already garnered attention for its powerful portrayal of the condition and the ongoing search for a cure.
Vedder and his wife, Jill Vedder, co-founded the EB Research Partnership, which has raised over $80 million and funded more than 180 research projects worldwide, according to the interview. “Matter of Time” aims to raise awareness about EB, a condition that primarily affects infants and children, and to inspire further support for research efforts. The documentary is now available for streaming on Netflix.
The conversation with Howard Stern wasn’t solely focused on EB, however. Vedder likewise shared anecdotes about his musical experiences, including jamming with the Rolling Stones in 1997 and a recent horseback ride with Bruce Springsteen. These stories offered a glimpse into the life of a rock icon deeply committed to both his art and his philanthropic endeavors.
Raising Awareness for Epidermolysis Bullosa
Epidermolysis bullosa (EB) is a group of rare genetic skin disorders that cause the skin to be extremely fragile. This fragility leads to blistering and wounds from minor friction or trauma. As Vedder explained, the film seeks to humanize the experience of living with EB, allowing viewers to understand the daily challenges faced by those affected and their families. He emphasized the importance of witnessing the realities of the condition, stating, “You do get to realize what this condition is. You do get to know what the kids and the parents go through — and parts of it are very tough to watch, but dammit you get to see and you get to feel and you get to understand that, you know, it’s heartbreaking, but it’s hopeful.”
From the Stage to Advocacy
Vedder’s dedication to raising awareness extends beyond the documentary. He recounted a story about an offer to perform with Pearl Jam at Madison Square Garden, where he playfully suggested Howard Stern play guitar instead of tambourine, wanting to ensure Stern felt “fortified and protected” on stage. He also revealed that the band added the song “Glorified G” to the setlist specifically for Stern, noting that Stern “breathe[s] new life into that song.”
The conversation also touched on Vedder’s experiences with other musical legends. He fondly remembered a backstage encounter with Mick Jagger of the Rolling Stones, describing the eccentric décor of Jagger’s dressing room as filled with “chiffon and leopard print.” He relayed a humorous observation from two Stones crew members questioning whether the band believed the entire world mirrored their flamboyant surroundings.
The Power of Music and Connection
Stern also asked Vedder about the exhilaration of performing live versus surfing. Vedder responded that both experiences offer a unique sense of reverence and excitement, but require complete immersion in the moment – a focus on not “wiping out.” He even admitted to occasionally forgetting song lyrics, relying on the audience to facilitate him out. This vulnerability highlighted the connection between Vedder and his fans, a relationship built on shared passion and mutual support.
You can watch Eddie Vedder discuss “Matter of Time” and more on YouTube.
The release of “Matter of Time” and Vedder’s continued advocacy are expected to further galvanize support for EB research. The EB Research Partnership continues to seek donations and raise awareness, hoping to accelerate the development of effective treatments and, a cure for this devastating condition. The ongoing efforts, fueled by Vedder’s platform and dedication, offer a beacon of hope for families affected by EB worldwide.
What are your thoughts on the power of music to drive social change? Share your comments below and help spread awareness about this significant cause.
