Eddie Vedder Changed Kids’ Lives with Pearl Jam. Now He and his Wife Jill Are Trying to Save Them
February 10, 2026
Celebrity charity efforts, however well-intentioned, don’t usually get anywhere close to solving problems for real. But Eddie and Jill Vedder‘s EB Research Partnership, in its 15th year of a sprint to cure a rare, devastating genetic skin disorder, is making actual progress towards its goal. When the Vedders launched their charity in 2010, there were zero treatments for epidermolysis bullosa, and just two clinical trials underway. Now, there are three FDA-approved therapies, which means new hope for parents and kids facing unimaginable suffering. “We’ve celebrated the progress, but the cure is what we’re after,” Eddie says, in a Zoom with Rolling Stone. “This is, scientifically, a solvable problem.”
Celebrity charity efforts, however well-intentioned, don’t usually get anywhere close to solving problems for real. But Eddie and Jill Vedder‘s EB Research Partnership, in its 15th year of a sprint to cure a rare, devastating genetic skin disorder, is making actual progress towards its goal. When the Vedders launched their charity in 2010, there were zero treatments for epidermolysis bullosa, and just two clinical trials underway. Now, there are three FDA-approved therapies, which means new hope for parents and kids facing unimaginable suffering. “We’ve celebrated the progress, but the cure is what we’re after,” Eddie says, in a Zoom with Rolling Stone. “This is, scientifically, a solvable problem.”
Breakthrough Gene Therapy For Butterfly Children’s DiseaseApril 30, 2025
ZEVASKYN - In a landmark development for rare disease treatment, the U.S. Food and Drug Administration (FDA) has approved ZEVASKYN, the first autologous, cell-based gene therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB), a devastating skin condition often called "Butterfly Children's Disease." The approval marks a pivotal moment not only for the half-million people worldwide living with this rare condition but also demonstrates the power of an innovative venture philanthropy model that's reshaping how rare disease research is funded. FIRST EVER TOPICAL GENE THERAPY APPROVED FOR “BUTTERFLY DISEASE” CHILDRENMay 24, 2023 VYJUVEK - Patient advocates have spent years raising awareness and funds for research through work with the non-profit EB Research Partnership (EBRP), and its unique Venture Philanthropy model. EBRP leverages concepts from principal investing and applies them towards achieving patient-oriented goals. EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track both potential cures for EB as well as therapies that could affect thousands of other rare diseases. EBRP has been able to generate a more than double return on its investment and reinvest that capital back into more EB projects. Accelerating Impact: EB Research Partnership is Empowering Rare Disease Patients to be in The Driver’s SeatJune 7, 2023 In a world where 95% of rare diseases lack FDA-approved treatments, organizations like EB Research Partnership (EBRP) are making a significant impact. With their groundbreaking work, EBRP not only provides hope to countless individuals and families affected by this devastating disease, but is also paving the way for progress across the wider rare disease health care space. Last year, EB Research won the 2022 Horizon Prize powered by MIT Solve and Horizon Therapeutics, which has been instrumental in propelling their mission to transform the lives of those living with Epidermolysis Bullosa (EB) and inspiring others to join the cause. |
Heartfelt Documentary Matter of Time Set to Premiere at the 2025 Tribeca FestivalApril 17, 2025 Matter of Time, a compelling documentary following Eddie Vedder and a passionate community uniting to cure a rare disease, will have its world premiere at the 24th Tribeca Festival on Thursday, June 12th. The film captures the electrifying energy of Vedder’s October 2023 solo concerts in Seattle, organized to raise critical funds for clinical research for Epidermolysis Bullosa (EB) - a rare and debilitating genetic skin disorder that mostly affects children, causing fragile, blistering skin. All proceeds from these concerts went directly to EB Research Partnership (EBRP), the world’s largest organization funding research for EB, with the ambitious goal of finding a cure by 2030. A Rare Disease Patient Registry
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Recent Press
Eddie Vedder Stops by to Discuss Epidermolysis Bullosa Doc ‘Matter of Time’
March 3, 2026
Rock and roll icon Eddie Vedder joined the Stern Show Tuesday morning to speak with Howard and his listeners about an issue very near and dear to his heart: epidermolysis bullosa (EB). As chronicled in “Matter of Time,” the Pearl Jam frontman and philanthropist’s soul-stirring new Netflix documentary, EB is a rare genetic disorder especially devastating to infants and young children. The heart-wrenching film blends powerful concert footage of Eddie’s 2023 benefit performances with a closer look at EB, the families it affects, and the scientific community’s race to find a cure.
Rock and roll icon Eddie Vedder joined the Stern Show Tuesday morning to speak with Howard and his listeners about an issue very near and dear to his heart: epidermolysis bullosa (EB). As chronicled in “Matter of Time,” the Pearl Jam frontman and philanthropist’s soul-stirring new Netflix documentary, EB is a rare genetic disorder especially devastating to infants and young children. The heart-wrenching film blends powerful concert footage of Eddie’s 2023 benefit performances with a closer look at EB, the families it affects, and the scientific community’s race to find a cure.
9th Annual Plunge for Elodie Poised to Surpass $3.5 Million Raised for EB Research Partnership
March 3, 2026
EB Research Partnership (EBRP) announces the 9th Annual Plunge for Elodie, taking place March–May 2026, with events across 4 continents. What began as a small hometown fundraiser has grown into a global movement, uniting thousands who brave icy waters to raise critical funds and awareness for Epidermolysis Bullosa (EB), a rare and life-threatening genetic skin disorder.
EB Research Partnership (EBRP) announces the 9th Annual Plunge for Elodie, taking place March–May 2026, with events across 4 continents. What began as a small hometown fundraiser has grown into a global movement, uniting thousands who brave icy waters to raise critical funds and awareness for Epidermolysis Bullosa (EB), a rare and life-threatening genetic skin disorder.
GIANTS Extend Partnership with EB Research Partnership Australia as Documentary Shines Global Spotlight on EB
March 2, 2026
The GIANTS are proud to announce the extension of their partnership with EB Research Partnership Australia (EBRPA), continuing a powerful alliance now entering its third year. As the club reaffirms its commitment to supporting Australians living with Epidermolysis Bullosa (EB), the extension coincides with the global Netflix release of the powerful new documentary Matter of Time, bringing unprecedented international attention to the urgent race to cure EB.
The GIANTS are proud to announce the extension of their partnership with EB Research Partnership Australia (EBRPA), continuing a powerful alliance now entering its third year. As the club reaffirms its commitment to supporting Australians living with Epidermolysis Bullosa (EB), the extension coincides with the global Netflix release of the powerful new documentary Matter of Time, bringing unprecedented international attention to the urgent race to cure EB.
Dr. Jeff Heddles & EB Research Partnership Launch Matter of Time $1 Million Match to Accelerate EB Treatments and a Cure
February 27, 2026
A $1 million matching gift from Dr. Jeff Heddles will double every donation, turning momentum from Matter of Time, the new Netflix documentary about Epidermolysis Bullosa (EB), into accelerated research progress.
A $1 million matching gift from Dr. Jeff Heddles will double every donation, turning momentum from Matter of Time, the new Netflix documentary about Epidermolysis Bullosa (EB), into accelerated research progress.
Eddie Vedder turns solo shows into fight for EB cure
February 27, 2026
Eddie Vedder uses his 2023 Seattle solo shows and the Netflix film Matter of Time to spotlight epidermolysis bullosa, a rare disorder that makes skin painfully fragile. He and Jill co-founded EB Research Partnership to drive research.
Eddie Vedder uses his 2023 Seattle solo shows and the Netflix film Matter of Time to spotlight epidermolysis bullosa, a rare disorder that makes skin painfully fragile. He and Jill co-founded EB Research Partnership to drive research.
Race to Cure Life-Threatening Skin Disease May Be Key to Help Others
February 26, 2026
This week, Rare Disease Day spotlights the day-to-day battles fought by one-tenth of humanity against illnesses that are under-recognized and may be incurable. One of these rare maladies is Epidermolysis Bullosa, or EB. It's a genetic skin disease that causes painful blistering, requiring patients to live their lives wrapped up in bandages. The lives of EB patients and the fight for a cure are the focus of the new documentary "Matter of Time," now streaming on Netflix. Hari Sreenivasan speaks with EB experts Dr. Jean Tang and Michael Hund about the struggle and resilience of those faced with the condition.
This week, Rare Disease Day spotlights the day-to-day battles fought by one-tenth of humanity against illnesses that are under-recognized and may be incurable. One of these rare maladies is Epidermolysis Bullosa, or EB. It's a genetic skin disease that causes painful blistering, requiring patients to live their lives wrapped up in bandages. The lives of EB patients and the fight for a cure are the focus of the new documentary "Matter of Time," now streaming on Netflix. Hari Sreenivasan speaks with EB experts Dr. Jean Tang and Michael Hund about the struggle and resilience of those faced with the condition.
eddie Vedder Opens Up About His New Documentary, Pearl Jam’s Activism, and More
February 26, 2026
During “Matter of Time: Eddie Vedder & Michael Hund,” the Pearl Jam frontman delves into the making of his powerful new music documentary, “Matter of Time,” exploring the urgent fight to cure Epidermolysis Bullosa (EB), a group of rare genetic conditions that affect one in every 50,000 children. Eddie also talks about Pearl Jam’s activism over the years, shares the story behind his song “Say Hi,” reflects on his history with Tom Petty, and more. Plus, Michael Hund discusses his involvement with the organization co-founded by Eddie and Jill Vedder, and the power of a community united by one dream: curing EB.
During “Matter of Time: Eddie Vedder & Michael Hund,” the Pearl Jam frontman delves into the making of his powerful new music documentary, “Matter of Time,” exploring the urgent fight to cure Epidermolysis Bullosa (EB), a group of rare genetic conditions that affect one in every 50,000 children. Eddie also talks about Pearl Jam’s activism over the years, shares the story behind his song “Say Hi,” reflects on his history with Tom Petty, and more. Plus, Michael Hund discusses his involvement with the organization co-founded by Eddie and Jill Vedder, and the power of a community united by one dream: curing EB.
CNBC Cures newsletter
February 20, 2026
When celebrities get behind a cause, the impact they have on it can be massive. Celebrities bring visibility to previously unseen communities — and turn attention into fundraising dollars that can drive change.
When celebrities get behind a cause, the impact they have on it can be massive. Celebrities bring visibility to previously unseen communities — and turn attention into fundraising dollars that can drive change.
Netflix Is Casting a Light on a Rare Disease. Pearl Jam’s Frontman Is Raising Cash to Cure It.
February 14, 2026
A nonprofit organization aiming to find a cure for a group of rare genetic skin disorders known as Epidermolysis Bullosa before the end of the decade is gaining ground on its goal by acting like a venture-capital firm instead of a charity.
A nonprofit organization aiming to find a cure for a group of rare genetic skin disorders known as Epidermolysis Bullosa before the end of the decade is gaining ground on its goal by acting like a venture-capital firm instead of a charity.
Eddie Vedder documentary, ‘Matter of Time’, about rare genetic skin disorder lands on Netflix
February 10, 2026
Matter of Time, which started streaming on the platform on February 9th, chronicles the benefit concert that Vedder helmed in 2023 in order to raise money in the fight against epidermolysis bullosa.
Matter of Time, which started streaming on the platform on February 9th, chronicles the benefit concert that Vedder helmed in 2023 in order to raise money in the fight against epidermolysis bullosa.
Knuth family part of documentary with Eddie Vedder
February 10, 2026
FOX VALLEY, Wis. (WFRV) – A Fox Valley family has teamed up with Pearl Jam frontman Eddie Vedder for a documentary to raise awareness on a rare skin disease. That documentary, entitled ‘Matter of Time,’ is now streaming on Netflix. “They’re going to laugh, they’re going to cry, and they’re going to see how quickly we need to cure this absolute torture that children are dealing with just on a daily basis,” Trisha Knuth said.
FOX VALLEY, Wis. (WFRV) – A Fox Valley family has teamed up with Pearl Jam frontman Eddie Vedder for a documentary to raise awareness on a rare skin disease. That documentary, entitled ‘Matter of Time,’ is now streaming on Netflix. “They’re going to laugh, they’re going to cry, and they’re going to see how quickly we need to cure this absolute torture that children are dealing with just on a daily basis,” Trisha Knuth said.
The 3 Best Movies To Watch on Netflix This Week (#2 Is an Old-School Action Thriller)
February 9, 2026
Documentary fans are in for a toe-tapping treat this week, with Netflix recently dropping the movie Matter of Time on Monday, February 9. A blend of music and a powerful search for a medical cure compose the structure of Matter of Time, which sets the fight to cure the rare genetic disease Epidermolysis Bullosa against the backdrop of several Eddie Vedder solo concerts in Seattle in 2023.
A soul-stirring documentary unlike anything else you'll watch this week, Matter of Time will likely pass many by despite its vital message. An inspirational story sure to bring you to tears, the music of Pearl Jam icon Vedder makes for the perfect beating heart of this heartbreaking yet ultimately uplifting documentary.
Documentary fans are in for a toe-tapping treat this week, with Netflix recently dropping the movie Matter of Time on Monday, February 9. A blend of music and a powerful search for a medical cure compose the structure of Matter of Time, which sets the fight to cure the rare genetic disease Epidermolysis Bullosa against the backdrop of several Eddie Vedder solo concerts in Seattle in 2023.
A soul-stirring documentary unlike anything else you'll watch this week, Matter of Time will likely pass many by despite its vital message. An inspirational story sure to bring you to tears, the music of Pearl Jam icon Vedder makes for the perfect beating heart of this heartbreaking yet ultimately uplifting documentary.
How Eddie Vedder Turned a Concert Into a Race Against a Rare Disease
February 9, 2026
Matter of Time centers on an unexpected question: what happens when a rock musician decides to take on a rare genetic disease with science, money, and music as his tools? The documentary traces Eddie Vedder’s deeply personal involvement in the effort to cure Epidermolysis Bullosa, a disorder that leaves skin so fragile it can tear at a touch, and explores why this once-overlooked illness has reached a turning point
Matter of Time centers on an unexpected question: what happens when a rock musician decides to take on a rare genetic disease with science, money, and music as his tools? The documentary traces Eddie Vedder’s deeply personal involvement in the effort to cure Epidermolysis Bullosa, a disorder that leaves skin so fragile it can tear at a touch, and explores why this once-overlooked illness has reached a turning point
What is Epidermolysis Bullosa? Eddie Vedder’s new Netflix documentary raises awareness of heartbreaking skin condition
February 9, 2026
Eddie Vedder is at the heart of Matter of Time, which arrives on Netflix this Monday, February 9, but the new documentary does not focus on the singer’s storied exploits with his band Pearl Jam.
Instead, the film tells the story of Vedder’s solo concerts in Seattle in October 2023, organized to raise money for clinical research into Epidermolysis Bullosa.
Eddie Vedder is at the heart of Matter of Time, which arrives on Netflix this Monday, February 9, but the new documentary does not focus on the singer’s storied exploits with his band Pearl Jam.
Instead, the film tells the story of Vedder’s solo concerts in Seattle in October 2023, organized to raise money for clinical research into Epidermolysis Bullosa.
Hope’s Still Alive in Eddie Vedder’s ‘Matter of Time’ Concert Film
February 9, 2026
There’s a particular gravity to watching Eddie Vedder perform on his own. Without the band, without the familiar roar of a Pearl Jam crowd, what’s left isn’t catharsis — it’s intention. Matter of Time understands that shift, and it’s why the film works. This isn’t just a concert movie, it’s a document about responsibility.
There’s a particular gravity to watching Eddie Vedder perform on his own. Without the band, without the familiar roar of a Pearl Jam crowd, what’s left isn’t catharsis — it’s intention. Matter of Time understands that shift, and it’s why the film works. This isn’t just a concert movie, it’s a document about responsibility.
Netflix documentary Matter of Time puts global spotlight on Epidermolysis Bullosa – driving hope for Australian families and researchers.
February 6, 2026
Premiering globally on Netflix on 9 February, Matter of Time follows the urgent international race to cure EB, a group of incurable genetic skin disorders that cause the skin to blister and tear at the slightest touch. Often referred to as “butterfly skin”, EB is one of the most painful and complex rare diseases, with no cure and limited treatment options.
Premiering globally on Netflix on 9 February, Matter of Time follows the urgent international race to cure EB, a group of incurable genetic skin disorders that cause the skin to blister and tear at the slightest touch. Often referred to as “butterfly skin”, EB is one of the most painful and complex rare diseases, with no cure and limited treatment options.
Arts roundup: Former San Diegan Eddie Vedder’s doc heads to Netfli
February 6, 2026
If you missed the screening of “Matter of Time,” the Matt Finlin-directed documentary about former San Diegan Eddie Vedder, his 2023 solo concerts in Seattle and his and wife Jill Vedder’s raising of awareness about a rare debilitating skin disorder, it’s making its streaming debut Monday on Netflix.
If you missed the screening of “Matter of Time,” the Matt Finlin-directed documentary about former San Diegan Eddie Vedder, his 2023 solo concerts in Seattle and his and wife Jill Vedder’s raising of awareness about a rare debilitating skin disorder, it’s making its streaming debut Monday on Netflix.
Eddie Vedder’s ‘Matter of Time’ Documentary Lands At Netflix, Sets Premiere Date
January 16, 2026
Eddie Vedder, lead singer of veteran rockers Pearl Jam, has been helping to fund a cure for Epidermolysis Bullosa (EB) and Netflix has picked up his documentary on the subject.
Eddie Vedder, lead singer of veteran rockers Pearl Jam, has been helping to fund a cure for Epidermolysis Bullosa (EB) and Netflix has picked up his documentary on the subject.
Documentary chronicling fight against EB now playing in theaters
November 7, 2025
Over the coming weeks, Matter of Time — a documentary that chronicles how scientists and advocates are working to find a cure for epidermolysis bullosa (EB) — will be playing at dozens of theaters across the U.S. and France. The documentary is a concert film, but more, according to its website: It tells the story of two solo concerts the singer Eddie Vedder, frontman for the rock band Pearl Jam, did in 2023 to raise money for EB research, alongside interviews with individuals and their families who are living with the rare disease.
Over the coming weeks, Matter of Time — a documentary that chronicles how scientists and advocates are working to find a cure for epidermolysis bullosa (EB) — will be playing at dozens of theaters across the U.S. and France. The documentary is a concert film, but more, according to its website: It tells the story of two solo concerts the singer Eddie Vedder, frontman for the rock band Pearl Jam, did in 2023 to raise money for EB research, alongside interviews with individuals and their families who are living with the rare disease.
A Quest for a Cure: The 'Come Say Hi' Story
October 22, 2025
Every once in a while, small things turn into big things—and this is one of those stories. What began with a sister’s love for her brother, who lives with a rare skin disease called epidermolysis bullosa, has become a global movement for awareness and hope. Her simple invitation “Come Say Hi” was born out of the stares and curiosity of strangers and led to an NBC 7 news story that caught the attention of a filmmaker.
Every once in a while, small things turn into big things—and this is one of those stories. What began with a sister’s love for her brother, who lives with a rare skin disease called epidermolysis bullosa, has become a global movement for awareness and hope. Her simple invitation “Come Say Hi” was born out of the stares and curiosity of strangers and led to an NBC 7 news story that caught the attention of a filmmaker.
New Documentary ‘Matter Of Time’ Featuring Eddie Vedder Chronicles The Fight To Cure Epidermolysis Bullosa
October 15, 2025
Tugging at the heartstrings and striking a balance of raw emotion with gripping storytelling is Matter of Time, the new Eddie Vedder-featured documentary by director Matt Finlin. The film spotlights families and supporters who are affected by the rare and devastating genetic disease, EB: Epidermolysis Bullosa.
Tugging at the heartstrings and striking a balance of raw emotion with gripping storytelling is Matter of Time, the new Eddie Vedder-featured documentary by director Matt Finlin. The film spotlights families and supporters who are affected by the rare and devastating genetic disease, EB: Epidermolysis Bullosa.
Eddie Vedder has one request for MLB's newest trophy: Play it!
August 26, 2025
Eddie Vedder himself put the finishing touches on the 1963 Fender Telecaster guitar by jamming out with it for about an hour last week before it was shipped off to T-Mobile Park for this week’s series between the Mariners and Padres. And when it arrived on Monday, the instrument -- which will serve as the Vedder Cup trophy for the rivalry between these clubs -- was as advertised in all its creative splendor.
Eddie Vedder himself put the finishing touches on the 1963 Fender Telecaster guitar by jamming out with it for about an hour last week before it was shipped off to T-Mobile Park for this week’s series between the Mariners and Padres. And when it arrived on Monday, the instrument -- which will serve as the Vedder Cup trophy for the rivalry between these clubs -- was as advertised in all its creative splendor.
Pearl Jam's Eddie Vedder tested guitar on new Vedder Cup trophy
August 25, 2025
Pearl Jam's Eddie Vedder didn't just donate any new guitar for the Vedder Cup trophy, he played it for an hour. Sometime last week after the most recent custom guitar from Fender arrived at the Pearl Jam warehouse, George Webb took the instrument for a visit.
Pearl Jam's Eddie Vedder didn't just donate any new guitar for the Vedder Cup trophy, he played it for an hour. Sometime last week after the most recent custom guitar from Fender arrived at the Pearl Jam warehouse, George Webb took the instrument for a visit.
GIANTS Stand tall for eb
August 22, 2025
The GIANTS will dedicate the final home game of the season to raise crucial funds for those battling Epidermolysis Bullosa (EB). As a charity partner of the GIANTS, EBRP is thrilled to align to Members Thanks game, honouring and celebrating the support of valued GIANTS members while celebrating the courage of those battling EB, and all rare diseases, worldwide. At quarter time on Sunday, all attendees will be invited to participate in the #StandUpforEB initiative. Those in attendance will be encouraged to participate in the butterfly wings activation. By standing together, we can demonstrate our collective support and solidarity for those battling EB, showcasing how community actions, both big and small, can drive GIANT change.
The GIANTS will dedicate the final home game of the season to raise crucial funds for those battling Epidermolysis Bullosa (EB). As a charity partner of the GIANTS, EBRP is thrilled to align to Members Thanks game, honouring and celebrating the support of valued GIANTS members while celebrating the courage of those battling EB, and all rare diseases, worldwide. At quarter time on Sunday, all attendees will be invited to participate in the #StandUpforEB initiative. Those in attendance will be encouraged to participate in the butterfly wings activation. By standing together, we can demonstrate our collective support and solidarity for those battling EB, showcasing how community actions, both big and small, can drive GIANT change.
EB Research Partnership Rings The Opening Bell® at The New York Stock Exchange to Shine Global Spotlight on Epidermolysis Bullosa
August 20, 2025
In a milestone moment underscoring the growing momentum in the fight against Epidermolysis Bullosa (EB), yesterday EB Research Partnership (EBRP) proudly rang The New York Stock Exchange Opening Bell®. Families living with EB and fierce EB advocates joined EBRP for the ceremony to celebrate the organization's groundbreaking progress and its growing impact on the rare disease community worldwide.
In a milestone moment underscoring the growing momentum in the fight against Epidermolysis Bullosa (EB), yesterday EB Research Partnership (EBRP) proudly rang The New York Stock Exchange Opening Bell®. Families living with EB and fierce EB advocates joined EBRP for the ceremony to celebrate the organization's groundbreaking progress and its growing impact on the rare disease community worldwide.
Eddie Vedder Talks Riding ‘The Surfboard of Hope’ at Tribeca ‘Matter of Time’ Film Premiere and Performance
June 13, 2025
The Pearl Jam frontman played a solo acoustic set following the premiere of a documentary about how he and his wife have catalyzed efforts to cure a rare skin disease.
The Pearl Jam frontman played a solo acoustic set following the premiere of a documentary about how he and his wife have catalyzed efforts to cure a rare skin disease.
Eddie, Jill Vedder Reveal The Human Side Of EB In ‘Matter Of Time’ Doc
June 13, 2025
Eddie Vedder capped the world premiere screening of the new documentary Matter of Time last night (June 12) at New York’s Spring Studios with a six-song acoustic performance, frequently pausing to salute the families struggling with the debilitating skin disease Epidermolysis Bullosa (EB) who are profiled in the film.
Eddie Vedder capped the world premiere screening of the new documentary Matter of Time last night (June 12) at New York’s Spring Studios with a six-song acoustic performance, frequently pausing to salute the families struggling with the debilitating skin disease Epidermolysis Bullosa (EB) who are profiled in the film.
9-Year-Old Girl with Devastating Skin Disorder Lives in Pain: 'I Can't Play on the Playground'
June 12, 2025
Tayma struggles with the most severe version of Epidermolysis Bullosa, also known as butterfly disease, a rare disorder that causes skin to blister and crack
Tayma struggles with the most severe version of Epidermolysis Bullosa, also known as butterfly disease, a rare disorder that causes skin to blister and crack
Eddie Vedder Amplifies Fight Against Childrens Butterfly Disease
June 10, 2025
Pearl Jam’s frontman turns his platform into a powerful force for epidermolysis bullosa research, just as breakthrough gene therapies offer unprecedented hope.
Pearl Jam’s frontman turns his platform into a powerful force for epidermolysis bullosa research, just as breakthrough gene therapies offer unprecedented hope.
Eddie Vedder Raises Awareness for Rare Disease in New Docu Clip
June 9, 2025
The closer you get to this community and the more you understand it, you cannot escape how difficult the challenges are for these families," Pearl Jam singer says in exclusive clip from Matter of Time
The closer you get to this community and the more you understand it, you cannot escape how difficult the challenges are for these families," Pearl Jam singer says in exclusive clip from Matter of Time
Memorial walk and butterfly bench dedicated to Elliana Rose Campbell: 'I want to feel as close to her as I can'
May 25, 2025
Shortly after Elliana Rose Campbell was born on May 23, 2024, her parents say she was diagnosed with what's been called the worst disease you've never heard of. Epidermolysis Bullosa (EB), is a rare skin disease with no known cure.
Shortly after Elliana Rose Campbell was born on May 23, 2024, her parents say she was diagnosed with what's been called the worst disease you've never heard of. Epidermolysis Bullosa (EB), is a rare skin disease with no known cure.
Memorial walk held for Brewer baby who died from rare skin disease
May 24, 2025
BANGOR — Mainers and social media followers around the globe are rallying behind a Brewer family mourning the death of their 10-month-old baby, Elliana Rose Campbell, who died of a rare skin disease in April.
BANGOR — Mainers and social media followers around the globe are rallying behind a Brewer family mourning the death of their 10-month-old baby, Elliana Rose Campbell, who died of a rare skin disease in April.
Pearl Jam’s Eddie Vedder performs for a purpose in ‘Matter of Time’ trailer: EXCLUSIVE
May 13, 2025
When Eddie Vedder took the stage in 2023 for a series of concerts in Seattle, he did it for a good cause. The Pearl Jam frontman’s shows were organized to raise funds for clinical research for epidermolysis bullosa — they were also recorded for a new documentary, “Matter of Time.”
When Eddie Vedder took the stage in 2023 for a series of concerts in Seattle, he did it for a good cause. The Pearl Jam frontman’s shows were organized to raise funds for clinical research for epidermolysis bullosa — they were also recorded for a new documentary, “Matter of Time.”
Eddie Vedder Partners with Fandiem for ‘Matter of Time’ World Premiere Flyaway Sweepstakes
May 5, 2025
On June 12, New York’s Tribeca Festival will host the world premiere of Matter of Time, a new documentary focused on Eddie Vedder and his efforts to raise awareness and funds towards a cure for Epidermolysis Bullosa. Centered in the Pearl Jam frontman’s two sold-out hometown solo shows at Seattle’s Benaroya Hall, which donated all proceeds towards vital ongoing research, the film weaves together concert footage and stories from doctors, researchers, parents and young people affected by the rare skin disorder for a revealing view of the purpose-driven artist and the cause that needed a champion.
On June 12, New York’s Tribeca Festival will host the world premiere of Matter of Time, a new documentary focused on Eddie Vedder and his efforts to raise awareness and funds towards a cure for Epidermolysis Bullosa. Centered in the Pearl Jam frontman’s two sold-out hometown solo shows at Seattle’s Benaroya Hall, which donated all proceeds towards vital ongoing research, the film weaves together concert footage and stories from doctors, researchers, parents and young people affected by the rare skin disorder for a revealing view of the purpose-driven artist and the cause that needed a champion.
Grateful for Graham 5K Run, Walk Raises Funds for Rare Genetic Disorder
May 3, 2025
Hundreds of people gathered in New Hartford Saturday morning for the fourth Annual Grateful for Graham 5K Run and Walk. The event took place along the Rayhill Memorial Trail located near the BOCES on Middle Settlement Road. Participants included a wide variety of runners and walkers. They were there to support Graham Robertello, a five-year-old boy who was born with a rare genetic disorder called epidermolysis bullosa or EB. The rare condition causes his skin to blister or sheer off at the slightest touch.
Hundreds of people gathered in New Hartford Saturday morning for the fourth Annual Grateful for Graham 5K Run and Walk. The event took place along the Rayhill Memorial Trail located near the BOCES on Middle Settlement Road. Participants included a wide variety of runners and walkers. They were there to support Graham Robertello, a five-year-old boy who was born with a rare genetic disorder called epidermolysis bullosa or EB. The rare condition causes his skin to blister or sheer off at the slightest touch.
U.S. FDA Approves ZEVASKYN™ (prademagene zamikeracel), the First and Only Cell-Based Gene Therapy for Patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB)
April 29, 2025
Abeona Therapeutics Inc. (Nasdaq: ABEO) today announced the U.S. Food and Drug Administration (FDA) has approved ZEVASKYN™ (pronounced as ‘ZEE-vah-skin’) (prademagene zamikeracel) gene-modified cellular sheets, also known as pz-cel, as the first and only autologous cell-based gene therapy for the treatment of wounds in adult and pediatric patients with recessive dystrophic epidermolysis bullosa (RDEB), a serious and debilitating genetic skin disease. There is no cure for RDEB and ZEVASKYN is the only FDA-approved product to treat RDEB wounds with a single application.
Abeona Therapeutics Inc. (Nasdaq: ABEO) today announced the U.S. Food and Drug Administration (FDA) has approved ZEVASKYN™ (pronounced as ‘ZEE-vah-skin’) (prademagene zamikeracel) gene-modified cellular sheets, also known as pz-cel, as the first and only autologous cell-based gene therapy for the treatment of wounds in adult and pediatric patients with recessive dystrophic epidermolysis bullosa (RDEB), a serious and debilitating genetic skin disease. There is no cure for RDEB and ZEVASKYN is the only FDA-approved product to treat RDEB wounds with a single application.
Historic achievement: FDA approval of Abeona Therapeutics' ZEVASKYN
April 29, 2025
EB Research Partnership ("EBRP") invested in the work that led to ZEVASKYN at Stanford University under their pioneering Venture Philanthropy Model. This approval marks a historic moment for the EB community as the third FDA approved treatment and the first autologous, cell-based gene therapy for RDEB (Recessive Dystrophic Epidermolysis Bullosa).
EB Research Partnership ("EBRP") invested in the work that led to ZEVASKYN at Stanford University under their pioneering Venture Philanthropy Model. This approval marks a historic moment for the EB community as the third FDA approved treatment and the first autologous, cell-based gene therapy for RDEB (Recessive Dystrophic Epidermolysis Bullosa).
Eddie Vedder’s Quest to Help Cure a Rare Disease Subject of New Documentary
April 22, 2025
Famous Pearl Jam frontman Eddie Vedder has decided to lend his star power to efforts to cure a rare skin disease. Inspired to take action after a family friend’s child was born with the malady, Vedder’s work leveraging the fame and draw of his shows for curing epidermolysis bullosa (EB) has been turned into a “powerful” upcoming documentary set to debut at Tribeca Film Festival in June.
Famous Pearl Jam frontman Eddie Vedder has decided to lend his star power to efforts to cure a rare skin disease. Inspired to take action after a family friend’s child was born with the malady, Vedder’s work leveraging the fame and draw of his shows for curing epidermolysis bullosa (EB) has been turned into a “powerful” upcoming documentary set to debut at Tribeca Film Festival in June.
Eddie Vedder’s quest to help cure a rare disease subject of new documentary
April 17, 2025
“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.
“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.
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