{"id":2741,"date":"2025-06-13T15:08:54","date_gmt":"2025-06-13T15:08:54","guid":{"rendered":"https:\/\/musictechohio.online\/site\/eddie-jill-vedder-matter-of-time\/"},"modified":"2025-06-13T15:08:54","modified_gmt":"2025-06-13T15:08:54","slug":"eddie-jill-vedder-matter-of-time","status":"publish","type":"post","link":"https:\/\/musictechohio.online\/site\/eddie-jill-vedder-matter-of-time\/","title":{"rendered":"Eddie, Jill Vedder Reveal The Human Side Of EB In \u2018Matter Of Time\u2019 Doc"},"content":{"rendered":"<div>\n<figure><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/static.spin.com\/files\/2025\/06\/GettyImages-2219887806-scaled.jpg\" width=\"1290\" height=\"860\" alt=\"\"><\/figure>\n<p>Eddie Vedder capped the world premiere screening of the new documentary <em><a href=\"https:\/\/www.youtube.com\/watch?v=UlxbxAe71qA&amp;pp=ygUZbWF0dGVyIG9mIHRpbWUgdHJhaWxlciBFQg%3D%3D\" target=\"_blank\">Matter of Time<\/a><\/em> last night (June 12) at New York\u2019s 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.<\/p>\n<p>Vedder and his wife Jill co-founded <a href=\"http:\/\/ebresearch.org\/\" target=\"_blank\">EB Research Partnership<\/a> in 2010 and have since raised $75 million to identify treatments and cures for the condition, which impacts children from birth. In the Matt Finlin-directed <em>Matter of Time<\/em>, these families assemble in Seattle in late 2023 for the inaugural Venture Into Cures summit and two solo Vedder concerts at Benaroya Hall. Throughout, viewers also see EB patients receiving three promising new, FDA-approved medications for the first time and get a powerful look inside the spirit and camaraderie of the rare disease community.<\/p>\n<p>More from Spin:<\/p>\n<ul>\n<li>\n\t\t\t<a href=\"https:\/\/www.spin.com\/2025\/06\/horror-show-friend-of-a-friend-made-their-new-record-at-the-site-of-americas-first-documented-exorcism\/\">Horror Show: Friend of a Friend Made Their New Record at the Site of America\u2019s First Documented Exorcism<\/a>\n\t\t<\/li>\n<li>\n\t\t\t<a href=\"https:\/\/www.spin.com\/2025\/06\/5-albums-i-cant-live-without-kristopher-roe-of-the-ataris\/\">5 Albums I Can\u2019t Live Without:\u00a0Kristopher Roe of the Ataris<\/a>\n\t\t<\/li>\n<li>\n\t\t\t<a href=\"https:\/\/www.spin.com\/2025\/06\/every-fugazi-album-ranked\/\">Every Fugazi Album, Ranked<\/a>\n\t\t<\/li>\n<\/ul>\n<p>\u201cYou\u2019ve given us a wave to ride the surfboard of hope,\u201d said Vedder, who played Warren Zevon\u2019s \u201cKeep Me in Your Heart,\u201d Tom Waits\u2019 \u201cPicture in a Frame,\u201d Glen Hansard\u2019s \u201cSong of Good Hope\u201d with his guitar tech Simon Good on acoustic, Pearl Jam\u2019s \u201cPorch\u201d and their fan-favorite cover of the \u201960s hit \u201cLast Kiss\u201d plus Tom Petty\u2019s \u201cI Won\u2019t Back Down.\u201d<\/p>\n<p>\u201cWith all the causes we\u2019ve been involved in, whether it\u2019s women\u2019s rights or the climate or when my sister had brain cancer, we\u2019ve never been able to \u2018fix\u2019 any of them,\u201d Jill Vedder tells SPIN. \u201cThis actually feels like something we can fix. The researchers believe we can do this. I believe it, because, watch us! The science backs us up that it can be done, and that\u2019s powerful. So, why would we stop now? We can\u2019t. We love these families too much.\u201d<\/p>\n<p>\u201cWe live in a divided world, but I think this is a really great example of a community that is doing whatever they can to fix something,\u201d adds Finlin. \u201cAnd there\u2019s proof in what they\u2019re doing. It\u2019s not just that we\u2019re saying this and it\u2019s not that we\u2019re selling a feeling. It\u2019s hopeful and it\u2019s happening. There\u2019s proof of that since we started the film. There\u2019s three-FDA approved treatments, where two years ago there was zero for 25 years. There\u2019s a young woman in the film named Deanna who is 29 years old, which is older for an EB patient with a severe form of dystrophic EB. When she was born, they could only use very simple, rudimentary care like bleach baths and bandages that protect the wounds so they don\u2019t get infected, but that was it.\u201d<\/p>\n<figure class=\"wp-block-image aligncenter size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1290\" height=\"860\" src=\"https:\/\/static.spin.com\/files\/2025\/06\/2219887941-1290x860.jpg\" alt=\"\" class=\"wp-image-466429\" style=\"width:719px;height:auto\" srcset=\"https:\/\/static.spin.com\/files\/2025\/06\/2219887941-1290x860.jpg 1290w, https:\/\/static.spin.com\/files\/2025\/06\/2219887941-340x227.jpg 340w, https:\/\/static.spin.com\/files\/2025\/06\/2219887941-240x160.jpg 240w, https:\/\/static.spin.com\/files\/2025\/06\/2219887941-768x512.jpg 768w, https:\/\/static.spin.com\/files\/2025\/06\/2219887941-1536x1024.jpg 1536w, https:\/\/static.spin.com\/files\/2025\/06\/2219887941-498x332.jpg 498w, https:\/\/static.spin.com\/files\/2025\/06\/2219887941-1668x1112.jpg 1668w\" sizes=\"auto, (max-width: 1290px) 100vw, 1290px\"><figcaption class=\"wp-element-caption\">Eddie Vedder performs during the \u2018Matter of Time\u2019 premiere (photo: Kevin Mazur \/ Getty Images for EB Research Partnership).<\/figcaption><\/figure>\n<p>Finlin devotes significant footage in <em>Matter of Time<\/em> to the day-to-day experiences of Deanna, who passed away shortly after the Seattle concerts, and the precocious Rowan, helping to highlight the speed at which EB research is moving. \u201cYou\u2019ve got two different generations,\u201d says Jill Vedder. \u201cOne had nothing and her parents had to make up how to wrap her and how to keep her healthy. And then you\u2019ve got Rowan, who you see receiving the FDA-approved treatment that\u2019s closing her wounds. That\u2019s not a cure. It\u2019s just quality of life for now, but that just didn\u2019t exist for Deanna.\u201d<\/p>\n<p>\u201cInstead of researchers spending half their time writing grants to try and get this science over the finish line, how do we get this from the lab to the bedside of a patient?,\u201d asks Finlin. \u201cWhat they\u2019ve done in this whole community, whether they\u2019re scientists or rock stars or leaders of an organization, is transform how they can speed up the trajectory of this disease. They\u2019re marching with these people to elicit an endgame.\u201d<\/p>\n<p>What\u2019s more, since EB involves a single-gene mutation, scientists are hopeful that breakthroughs in this realm could one day lead to curing other similar diseases. \u201cYou may be learning about EB for the first time in this movie, but everybody knows somebody with a rare disease,\u201d EBRP CEO Michael Hund tells SPIN. \u201cThat\u2019s 400 million people \u2014 one in 10 people on this planet. Yet 95% have no approved treatments. We\u2019ve been able to do that three times in the last two years, thanks to the brilliance of people like [EB clinician] Dr. Jean Tang. But what we feel a duty and an obligation for in the film will be a massive launching battle. This model of data technology innovation collaborating with academics and a venture philanthropy investment model is innovative and different. We hope it can benefit some of those other 10,000 rare diseases as well.\u201d<\/p>\n<p>For the Vedders, becoming a part of the EB community as a family has further crystalized their commitment. \u201cAs a kid, I was friends with all these kids, and I grew up so invested in it,\u201d Eddie and Jill\u2019s 21-year-old daughter Olivia tells SPIN. \u201cBut also, I had to be extra careful [around them] and it always made me sad. I really care on another level, because this is our thing. These last two years I\u2019ve gotten to really join the team a little more, and to see this progress is unbelievable.\u201d<\/p>\n<\/p>\n<p>To see our running list of the top 100 greatest rock stars of all time, <a href=\"https:\/\/www.spin.com\/2021\/07\/the-greatest-rock-stars-of-all-time\/?utm_source=yahoo&amp;utm_medium=bottomlink&amp;utm_campaign=yahoolink\">click here<\/a>.<\/p>\n<\/div>\n<div style=\"margin-top: 0px; margin-bottom: 0px;\" class=\"sharethis-inline-share-buttons\" ><\/div>","protected":false},"excerpt":{"rendered":"<p>Eddie Vedder capped the world premiere screening of the new documentary Matter of Time last night (June 12) at New York\u2019s Spring Studios with a six-song acoustic performance, frequently pausing&hellip;<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1662,6,260,24],"tags":[],"class_list":["post-2741","post","type-post","status-publish","format-standard","hentry","category-eddie-vedder","category-news","category-pearl-jam","category-pushly"],"_links":{"self":[{"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/posts\/2741","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/comments?post=2741"}],"version-history":[{"count":0,"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/posts\/2741\/revisions"}],"wp:attachment":[{"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/media?parent=2741"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/categories?post=2741"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/musictechohio.online\/site\/wp-json\/wp\/v2\/tags?post=2741"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}