EB Research Partnership

A global story of urgency, love, and science, now ready for the world. Matter of Time is available to Netflix members everywhere on February 9.

More than halfway to our $1M Match for Epidermolysis Bullosa (EB). But halfway isn’t the goal, a cure is. Every donation supports EB research and is matched dollar for dollar right now, thanks to the generosity of Dr. Jeff Heddles. 🦋 Double your impact today: give.ebresearch.org/campaign/77405…

At 8, Maud met her baby sister, Puck. Puck was born with Junctional EB and lived just 5½ weeks, surrounded by love. Now, as Miss Teen Galaxy Netherlands 2026, Maud is sharing her story to raise awareness and drive research forward. 🦋 Honor Puck. Help change what’s possible. #EB #RareDisease

What if we could train doctors to spot cancer in EB earlier? Dr. Amy Paller’s team at @NorthwesternU is using AI-generated, privacy-safe images to help clinicians detect squamous cell carcinoma sooner, even across diverse skin tones. By comparing EB skin with and without cSCC side-by-side, this work sharpens clinical judgment and improves equity in diagnosis. 🧬 Funded by EBRP to push research forward, faster. Read more: ebresearch.us-1.smartsimple.com/files/1557436/… 🦋 100% of donations go to research and are currently doubled → give.ebresearch.org/campaign/77405… #EB #RareDisease #AIinHealthcare #Dermatology #CancerDetection

This week, Jacob walked to kindergarten. For most kids, that’s ordinary. For Jacob, born with severe Epidermolysis Bullosa, it’s extraordinary. After becoming the first child in Australia to receive B-VEC at Royal Children's Hospital Melbourne, wounds that never healed are finally closing. Decades of science. Years of advocacy. A community that refused to wait. And this is just the beginning. Every child who needs this should have access. heraldsun.com.au/health/family-… #EpidermolysisBullosa #GeneTherapy

Progress in rare disease isn’t just about discovery, it’s about building the path to delivery. For EB, that means strong data, patient registries, trial infrastructure, and the voices of families guiding the way. Grateful to Chicago Health and Catherine Gianaro for highlighting this work. 🔗 chicagohealthonline.com/from-discovery… #RareDisease #EB #ClinicalResearch

We lost someone truly special this week, John Hudson. John Hudson passed away at 23 after living with Epidermolysis Bullosa (EB). Heroes aren’t measured by the size of their strength, but by the size of their heart. And John had one of the biggest hearts we’ve ever known. He faced EB with courage, always thinking about others, always finding a way to show up, especially for younger kids walking the same path. He believed, deeply, that his life could help change what comes next. And it did. John Hudson shared his story with millions. Not to be seen, but to help others feel seen. He carried himself with humor, warmth, and a presence that stayed with you long after you met him. He loved cooking for his family, Japanese culture, Disney, the New York Rangers, and all things Marvel. He had a way of connecting with people that felt easy, real, and lasting. Here’s a tribute from EBRP co-founder Eddie Vedder, who honored John Hudson on stage in Japan, one of John’s favorite places, and dedicated “I Won’t Back Down” to his memory. Through Special Books by Special Kids, John Hudson reached millions, not just because of EB, but because of who he was. His friendship with Chris, the channel’s host, showed the world what real connection looks like and inspired all of us in ways we’ll carry forward. A superhero, in every sense of the word. In memoriam, John Hudson. We love you. Sending all our love to his mom, Faye, and the Dilgen family.

More moments from Vedder Cup 2026 ⚾️🦋 The San Diego @Padres vs. Seattle @Mariners rivalry continues May 15–17 at @TMobilePark in Seattle, helping raise awareness for EB, the butterfly disease, through EB Research Partnership. To make a donation or win a custom Vedder Cup jersey visit ebresearch.org/vedder-cup-202… 📸 Carlos Yidonoy

ありがとう Kyoto! 🙌

About last night… 🔥⚾️ From a special first pitch by Karen Vedder, @eddievedder's mom and a champion of EB Research Partnership, to a bottom-of-the-9th comeback you had to see to believe… Petco was electric. We were honored to share the night with EB families, whose strength is at the heart of everything we do. Thank you to the @Padres, @Mariners, and every fan who showed up and helped shine a light on Epidermolysis Bullosa, the “butterfly disease.” Next stop: Seattle. May 15–17. The Vedder Cup continues. 🦋 Win 1 of 10 custom Vedder Cup jerseys, your name on the back: ebresearch.org/vedder-cup-202…

San Diego vs. Seattle… it’s ON. ⚾️🔥 The #VedderCup City vs. City Donation Challenge is live and every dollar moves us closer to a cure. 💯 100% of every donation supports research for Epidermolysis Bullosa (EB) through EB Research Partnership, founded by Jill and @eddievedder. Enter for a chance to win 1 of 10 custom Vedder Cup jerseys with your name. 🦋 Join now: ebresearch.org/vedder-cup-202…

Meanwhile, Michael Hund of @EBResearch illustrated how investments in development of therapies for #EpidermolysisBullosa yield significant revenue that they then direct towards new research. 2/3

Tomorrow, the @Padres and @Mariners run it back. ⚾️ The #VedderCup begins April 14–16 at Petco Park. More than a rivalry, the Vedder Cup raises awareness for Epidermolysis Bullosa (EB) and supports research through EB Research Partnership, founded by Eddie and Jill Vedder. This year, fans can join in. Pick your city. Take the lead. Help fund a cure. 🦋 Join the City vs. City Challenge for a chance to win one of 10 custom Vedder Cup jerseys, personalized with your name ... 👀 ebresearch.org/vedder-cup-202…

The Vedder Cup is back. @Padres vs @Mariners kicks off next week in San Diego ⚾️ More than a rivalry, every game raises awareness for EB and funds research through EB Research Partnership, founded by @eddievedder & Jill Vedder. Seattle took it last year… Who takes it this year? 🦋 Learn more: ebresearch.org/vedder-cup-202…

What started as families searching for hope has evolved into a powerful new model for funding cures. Through Venture Philanthropy, EBRP is delivering measurable impact: 🔬 50+ clinical trials 🌍 200+ research projects across 20 countries 💰 $80M+ deployed to accelerate progress This is more than momentum, it’s a scalable path to cures for EB and thousands of rare diseases. We’re grateful to @NYSE and Ashley Mastronardi for helping elevate this mission and for partners who believe we cannot afford to wait. 🦋 Learn more: ebresearch.org #EndEB #Philanthropy #ImpactInvesting #RareDisease

We’re proud to share that our CEO, Michael Hund, has been invited to join the Fast Company Impact Council. Thank you to @FastCompany for bringing together leaders across business, innovation, and social impact who are helping shape what comes next. This moment reflects something we’ve long believed at EB Research Partnership: solving rare disease will require more than traditional models. It will take new ways of thinking, new ways of funding progress, and a willingness to build better paths forward for patients and families who deserve more options, more momentum, and more hope. For more than 20 years, Michael has worked at the intersection of Venture Philanthropy, impact investing, and medical innovation. At EBRP, that leadership has helped transform the Epidermolysis Bullosa landscape, growing the pipeline from 2 clinical trials to more than 50 and helping accelerate 3 FDA-approved treatments. Michael’s place on the Fast Company Impact Council reflects the kind of organization EBRP has worked to become. Innovation-led, results-driven, and part of the broader conversation about how bold ideas can change lives. We’re grateful to be part of these conversations, to contribute and learn alongside this community, and to keep advancing a model built not just to fund research, but to redefine what’s possible for rare disease. We look forward to sharing insights and ideas from the road ahead. 🦋 🧬

At last month’s Town Hall, our CEO Michael Hund shared a simple idea: Hope isn’t passive. It’s collective. It’s what happens when people decide to show up, with their time, talent, resources, and energy, and push something forward together. That’s what this community looks like. If you’ve been looking for a way to get involved, this is it. 🦋 Every donation is doubled through our $1M Match, made possible by Dr. Jeff Heddles. 🤍 100% of your donation goes directly toward research, treatments, and finding a cure, thanks to our angel donors who underwrite our operations. Donate: give.ebresearch.org/campaign/77405…

"Running the NYC Half Marathon was both mentally and physically demanding, pushing me well beyond my comfort zone. Despite the challenge, it was an incredibly rewarding experience. Having the opportunity to run in support of EBRP made every mile more meaningful, serving as a constant source of motivation and reminding me of the greater purpose behind the effort.” - EBRP Runner Julia Clark. Julia has been part of the EBRP team every day, and last week, she carried that commitment through the streets of NYC. We’re so proud of Team EBRP for raising $22,749 this race to fund research and move us closer to a cure. 🏃‍♂️ Find other ways to support EB research at ebresearch.org/ebactive

It started with a couple of benefit concerts… At the same time, families + researchers from around the world were gathering in Seattle. They followed it all. What came out of those two days is Matter of Time 🎬 Hear Director Matt Finlin (Door Knocker Media) on Cinemafile with Mike Kaspar now on Spotify, YouTube & more. Now streaming on @Netflix 🦋 Learn more: ebresearch.org #MatterOfTime #RareDisease

Thomas DiPalma lives with Epidermolysis Bullosa (EB) often called “the butterfly disease” 🦋 for the fragility of the skin. In this conversation, EBRP CEO Michael Hund breaks down what EB is and why it brings both urgency and hope. Grateful to @NYSE & Ashley Mastronardi for helping shine a light on this story. Awareness drives action. Action drives cures. Learn more: ebresearch.org #EpidermolysisBullosa #RareDisease