This #EBAwarenessWeek, we need your help to make a BIG impact. 🦋🦋🦋 Every dollar donated to our #WingsofChange campaign will be DOUBLED up to $250,000. No action is too small. We can ALL make a difference in the fight against EB. Join us. @eddievedder

You did this, Graham’s Gang! 💙 $61,355.35 is going to EB research because of you! Thank you for believing in a cure. Let’s keep going! Donate at . #GratefulForGraham #EBResearch

Only 200 limited-edition fine art prints of Paul Kobinger’s ballpoint portrait of Eddie Vedder exist, each one hand-signed by Eddie and Paul. Every print helps fund life-saving research for kids living with EB. FRAMED: UNFRAMED:

“I’ve been waiting 8 years.” 💙 At the Matter of Time panel, young Rowan shared why her family joined the film: to raise awareness, fund research, and push for treatments EB patients need. She’s still waiting. Still hopeful. Help bring us closer to a cure:

We hit our $250K match! 💙 Thanks to Dr. Jeff Heddles' incredible generosity, and every supporter who showed up, we're one step closer to curing EB. Let’s keep going. Donate now: #HealEB #EBResearch

2,355 miles in 32 days, he made it to the Continental Divide. 💪 After biking cross-country to raise awareness for those with EB, Rich Parnell has raised $11,577.05 of his $20K goal. Help him go the distance: donate now at 💙🦋 #HealEB #EBResearch

EB RESEARCH AUSTRALIA: End-of-financial-year giving can feel like a box to tick, until you realise it can help kids with Epidermolysis Bullosa. EBRP helped deliver 3 FDA-approved treatments in 2 years. Donate by 30 June to keep progress moving. 🔗

Thank you @nystatemusic for capturing the heart of Matter of Time and the strength of our butterfly children, families, and founders Jill & Eddie Vedder. 🦋. Read more: . #MatterOfTime #HealEB #Tribeca2025

Mental health matters, especially in the EB community. 💙🧠 In our May Town Hall, Dr. Anne Davis & Dr. Jamie Feinstein shared personal stories, practical tools, & powerful reminders: mental health is EB care. 🎥 Watch: #HealEB #MentalHealthAwareness

From film to FDA approval 🎬. At the Matter of Time Tribeca panel, Dr. Jean Tang shared that Stanford’s gene therapy for recessive dystrophic EB is now FDA approved, a breakthrough powered by patients & donors. 🦋 . Help us keep going: #HealEB #EBResearch

". There’s no stopping us now." - Dr. Jamie Feinstein. Our researchers and clinicians showed up with heart at Tribeca. This wasn’t just a premiere, it was a reminder of why we keep going. 💙🦋 #HealEB #MatterOfTime

Thank you @billboard for covering Matter of Time at @Tribeca and helping share the heart behind this film. Eddie & Jill Vedder’s passion for the EB community shines through every frame. 💛. #HealEB #MatterofTimeFilm #Tribeca2025.

To every family who stepped onto the Matter of Time red carpet at Tribeca, you lit up the premiere. This film carries your stories, your strength, and our mission to heal EB. 📸: Kevin Mazur/Getty Images for EB Research Partnership, @sachynmital @geoffwhitman

Thank you @SPIN for highlighting 'Matter of Time' and the passion behind it. Grateful to our co-founders Eddie & Jill Vedder and everyone helping shine a light on EB. 💙 Read more: #HealEB #MatterofTimeFilm #Tribeca2025.

We’re honored to share that our CEO, Michael Hund, has been featured in this month’s TRAIN Impact Story series from @MilkenInstitute!. In the feature, Michael shares EBRP's journey in transforming epidermolysis bullosa (EB) research, reflects on how his TRAIN experience

Matter of Time's premiere @Tribeca was nothing short of unforgettable. The film brought the room to tears and filled it with hope. @eddievedder followed with a stunning acoustic set, capping off a powerful night for the rare disease community.⁠.⁠.Set against the backdrop of

Thank you to the team at @tribeca for welcoming #MatterofTime with open arms. Thank you to every single person who showed up to listen and to support the mission. To Jill and Ed, thank you for your leadership, and your unwavering commitment to shining a light on EB. And to the

Don’t miss the special @PearlJam Radio broadcast on @SiriusXM (channel 22) at 12pm ET—featuring music and voices from the wonderful documentary, Matter of Time, right on the heels of the premiere at @tribeca last week! 🦋. Hosted by EBRP supporter Sean Casey and Michael Hund, CEO

Kids like Tayma are the reason we fight every day to find a cure for Epidermolysis Bullosa (EB). Her courage and resilience inspires everything we do and brings hope to families around the world affected by a rare disease. Thank you to @umassmemorial and @PEOPLE for helping.

Last night we were honored to premiere #MatterofTime at @Tribeca. Thank you to all those who came out to support the film and the mission of EBRP. With you, it’s only a matter of time until we find a cure. 🦋. 📸 Credit: Photo by Kevin Mazur/Getty Images for EB Research

RT @Hubik78: Matt Finlin & Karen Barzilay on “Matter Of Time,” Tribeca, Eddie Vedder, Broken Social Scene & EB @eddievedder @EBResearch #Ed….