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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.
ALT Matter of Time documentary on Netflix, premiering February 9. A powerful rare disease film following families living with Epidermolysis Bullosa, researchers racing toward treatments, and Eddie Vedder’s benefit concert supporting EB research.
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One year ago today, Matter of Time premiered at Tribeca.
Since then, it’s traveled from sold-out theaters to Netflix, bringing thousands closer to the EB community and the urgent fight for a cure.
Driven by music. Carried by community. Fueled by hope.
🦋 Watch now on Netflix.
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Where art meets science. 🎨🦋
Join us to celebrate the launch of our community art book and a conversation on the human side of EB research.
We'll hear from Emily Boros-Rausch, an artist living with EB; Lara Peck, an advocate who recently underwent ZEVASKYN; Dr. Amy Paller of Northwestern, one of the clinicians trained to deliver it; and Michael Hund, EBRP's CEO.
June 22 at 5 PM ET 🔗 RSVP: ebresearch.org/townhallrsvp
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The road to a cure is built by people who refuse to stop. Graham’s Gang is proof. 💗
This year’s #GratefulforGraham 5K brought Graham’s Gang together once again to run, walk, give, and show what it means to fight for a future without EB.
To Graham, his family, the Utica Roadrunners, and every runner, walker, sponsor, volunteer, donor, and supporter, thank you for turning love into action.
🦋 Ready to move for a cure? Join EB Active and turn your next walk, run, ride, or community event into funding for EB research. ebresearch.org/ebactive
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And just like that… our final Plunge of the season is complete! 🌊💙
Last weekend, the Rippole Family and the Pittsburgh Plunge for Patterson community ended the #PlungeForElodie season with an incredible splash, tripling their fundraising goal for EB Research Partnership.
What a way to close out the season. Thank you, Pittsburgh, for showing up, diving in, and making waves for EB research.
The season may be complete, but the mission continues. Help us fund the research that brings us closer to a cure at plungeforelodie.org.
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Meet the scientific minds helping guide us closer to a cure for EB.
EBRP’s Scientific Advisory Board brings together leading doctors, researchers, and experts who help review, shape, and strengthen the research we fund.
Their insight helps ensure donor dollars move toward the projects with the greatest potential to change life for people living with EB.
Breakthrough science needs more than funding. It needs the right people asking the right questions and pushing the field forward with urgency.
Thank you to our SAB for helping guide the path ahead.
🦋 Learn more about our SAB at ebresearch.org/leadership
ALT The image features a graphical layout titled "Meet Our SAB: Scientific Advisory Board" with photos of eight individuals arranged in two rows. Each photo is set against a blue circular background with the names and titles of the individuals: Greg Barsh, Ph.D., Anne Lucky, M.D., Suephy Chen, M.D., M.S., Christopher Sloey, Alain Hovanian, M.D., Ph.D., Amy Paller, M.D., Elena Pope, M.D., M.Sc., FRCPC, and Andrew South, Ph.D. The design includes decorative scientific motifs.
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Some partners help you make content. Others help you carry a mission.
Since 2018, Door Knocker Media has helped EBRP share EB stories with heart, honesty, and purpose. Today, we’re celebrating 3 @TellyAwards for our PSA featuring Eddie Vedder and Rowan Holler.
More than the awards, we’re celebrating the people behind every frame. We love you, Matt, Karen, and everyone at DKM. 🦋 Thank you for helping the world see EB more clearly and helping this community feel seen.
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“The more people you meet, the more you want to help.”
Robbie Twible sat down with Dr. Jeff Heddles, the donor behind our Matter of Time $1 Million Match, to talk about what inspired him to step forward for the EB community and why he believes so deeply in EBRP’s mission.
We’re now 90% there, and the final 10% matters. The sooner we raise the remaining funds, the sooner we unlock Jeff’s full $1 million and help accelerate even more EB research projects, clinical trials, and progress toward treatments and cures.
100% of every donation goes directly to research.
🦋 Donate to help us cross the finish line: give.ebresearch.org/campaign…
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ZEVASKYN® (prademagene zamikeracel), an FDA-approved gene-modified cellular sheet therapy, is now available at Children’s Hospital of Philadelphia (CHOP).
📍ZEVASKYN was approved by the FDA in April 2025
📍To see a list of additional ZEVASKYN Qualified Treatment Centers that are now accepting patients, visit zevaskyn.com/treatment-cente…
📍Patient support is available through Abeona Assist® at abeonaassist.com
Connect with people who have been treated with ZEVASKYN, an their caregivers, through the Strong Together Network™ at info@strongtogethernetwork.com or 1-888-782-4042
💡 Learn more at ZEVASKYN.com
ALT Exterior of the Children's Hospital of Philadelphia building. Text on the image reads: "Zevaskyn (prademagene zamikercel) gene-modified cellular sheets now available in Pennsylvania" and "Children's Hospital of Philadelphia (CHOP)."
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We're heading to Brooklyn! 🏀🦋
Join EBRP and @nyliberty on May 29th at Barclays Center! Grab your tickets through our link and $10 goes directly to finding a cure for Epidermolysis Bullosa.
Part of the EB community and want to attend? DM us!
Get your tickets here: liberty.spinzo.com/new-york-…
ALT Poster for a WNBA game between New York Liberty and Phoenix Mercury, promoting Pride Night. Includes two people in front of a large "Liberty" backdrop, smiling and posing. Details at the bottom mention the event on May 29th, 7:30 pm, at Barclays Center.
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Robbie Twible sat down with Dr. Jeff Heddles, the donor behind our Matter of Time $1 Million Match, to ask what inspired him to step forward for the EB community.
His answer reminds us what this match is really about... belief, urgency, and the chance to move research faster.
Our match is now 80% complete, but the final 20% matters. It could help support 6–7 new EB research projects, up to half of a Phase 1 clinical trial, and faster progress toward treatments and a cure for Epidermolysis Bullosa.
100% of every donation goes directly to research.
🦋 Donate: give.ebresearch.org/campaign…
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On May 20, 1747, a ship's surgeon named James Lind gave oranges and lemons to sailors dying of scurvy and conducted what is considered the first randomized clinical trial in history. He didn't know it then, but he changed medicine forever.
Today, International Clinical Trials Day honors that legacy. And for the EB community, it's a moment to reflect on how far clinical research has come.
When EBRP was founded in 2010, there were just 2 active EB clinical trials in the world. Sixteen years later, there have been over 50. Of the active trials today, EBRP-supported research represents a third, spanning gene therapy, wound care, ocular treatments, and AI-assisted cancer detection across 25 clinical trial sites worldwide.
That research leads to real breakthroughs. VYJUVEK™, the first topical, redosable gene therapy in history, was FDA-approved for Dystrophic EB in 2023, supported in part by EBRP's early investment. ZEVASKYN®, approved in 2025, followed the same path; EBRP-backed Stanford science that became the first cell therapy approved for RDEB wounds. The returns from both were reinvested 100% into new EB research. This is how our gifts compound. This is how we get to the next one.
From a ship in the English Channel to two FDA-approved breakthroughs for EB, this is what belief in the science looks like!
#ClinicalTrialsDay #CTD2026 #ResearchRising @ACRPDC
@KrystalBiotech
@AbeonaBio
🦋 100% of your donation goes straight to EB research: ebresearch.org
ALT graphic for International Clinical Trials Day by EB Research Partnership. It highlights a 25-fold increase in EB clinical trials since 2010, driven by EBPRP-funded science.
ALT This image is a promotional graphic for International Clinical Trials Day. It features statistics in bold pink text: "36 active trials today," "1/3 EBRP-supported," and "25 clinical trial sites." Below, it states, "A third of all active EB trials today are EBRP-supported." The text mentions areas of focus: gene therapy, wound care, ocular treatments, and AI-assisted cancer detection in the US, France, and Chile. The logo at the top is a stylized butterfly, and the bottom credits the (EB) Research Partnership.
ALT This image is a promotional poster for International Clinical Trials Day. The text highlights the significance of VYJUVEK™, the first topical, redosable gene therapy in history. Key points include: "2017 EBRP early investment in Krystal Biotech," "2023 FDA approved for Dystrophic EB," and ">110% ROI reinvested into new EB research." The poster emphasizes the EBRP's model of reinvesting returns into future breakthroughs. The background is dark with bold, colorful text drawing attention to key achievements.
ALT An informative graphic celebrating International Clinical Trials Day. The main text reads, "Research becomes reality." It highlights ZEVASKYN, a gene therapy for RDEB, mentioning a $500K investment, FDA approval expected in 2025, and a sixfold return on investment. Additional text discusses the reinvestment of returns into further research breakthroughs. The logo of "EB Research Partnership" is at the bottom.
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We are approaching one year since #MatterOfTime premiered at @Tribeca. 🦋
What followed, a global theatrical run, a Netflix release, millions of viewers moved to do more, became a movement.
Now we move with them, and for those with Epidermolysis Bullosa.
#MatterOfMiles is a global virtual run/walk for everyone who refuses to stand still in the face of urgency.
June 12–28. Pick your mileage. Rally your people. Help turn movement into a cure. Lace up with us.
🔗 Sign up → give.ebresearch.org/campaign…
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EB Research Partnership retweeted
May 18
A massive thank you to the @Mariners and @Padres for playing in support of @EBResearch! Every Vedder Cup game helps raise awareness for Epidermolysis Bullosa (EB) and fund research for a cure. From the players to the fans and everyone showing up to the ball field – thank you!
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EB Research Partnership retweeted
May 16
Congrats to the Padres who won the 2026 @VedderCup. The real winner was @EBResearch
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He has EB. He loves baseball. And he has something to say. 🦋⚾
Robbie is an aspiring sportscaster living with Epidermolysis Bullosa and he's pumped for the Vedder Cup.
The @Mariners vs @Padres rivalry founded by Eddie Vedder raises funds for EB research. The series is live at T-Mobile Park through May 17. Every dollar funds a cure for those like Robbie.
See how you can be part of it → bit.ly/4ugQRFq
Raffle closes May 17 at 11:59PM. 🦋
#VedderCup #EBResearch #EpidermolysisBullosa #Mariners #Padres #EddieVedder #RareDisease
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Did you know the #VedderCup is helping raise awareness for Epidermolysis Bullosa (EB), the “butterfly disease”? 🦋⚾️
The second half of the @Padres vs. @Mariners series heads to Seattle this Friday, May 15 at T-Mobile Park.
What started as a baseball rivalry is now helping spotlight the mission of @EBResearch, the nonprofit founded by Jill and Eddie Vedder to accelerate treatments and a cure for EB.
Visit below to join the City vs. City Challenge and enter to win 1 of 10 custom Vedder Cup jerseys, personalized with your name.
bit.ly/4ugQRFq
100% of every dollar donated funds EB research.
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Last week, EBRP CEO, Michael Hund was invited to speak at the @MilkenInstitute Global Conference, one of the most influential cross-sector convenings in the world, where capital, policy, science, and culture meet. Innovative global leaders across finance, health, philanthropy, government, and entertainment gather to drive global impact and action. EBRP was proud to join other innovators like Dr. Jill Biden, @pitbull, Eva Longoria @EvaLongoria, Tiffany Haddish @TiffanyHaddish, Tom Brady @TomBrady, Lionel Ritchie , @SHAQ, FDA Commissioner @MartyMakary, and other world-changing global leaders.
Michael was invited to join "Rewriting the Rules: Scaling Innovation for Rare Diseases," a panel that brought together some of the most influential voices in rare disease today, or as Michael said, "The Rare Disease Avengers". Moderated by Becky Quick of CNBC, who shared her own journey as the mother of a child with SYNGAP disorder, the panel featured @DavidFajgenbaum (Every Cure), Nicola Blackwood (@GenomicsEngland ), Neil Kumar (@BridgeBioPharma ), and Will Lewis (@Insmed).
This is the kind of platform where EB Research Partnership's model belongs. Urgent patient need, breakthrough science, and catalytic capital converging to change what is possible. This week's conversation was a powerful reminder of both the scale of the challenge and the urgency of the moment. About 400 million people worldwide live with a rare disease. Only 5% have access to any approved treatment. And yet, we are at a genuine inflection point, driven by AI, genomics, platform-based therapies, and a new generation of funding models that are beginning to close the gap.
Michael shared our Venture into Cure's model, combining data platform innovation and investments in AI, collaborative research/ medical/ industry networks, and venture philanthropy deal structures that return capital to fuel the next breakthrough. An unprecedented model that has now helped accelerate three FDA approvals in two years. That model was built for exactly the kind of cross-sector stage that Milken represents. For the millions living with rare diseases that have never had a treatment, this is not incremental progress. It is a fundamental rewriting of the rules. And it is scalable.
For EBRP, being in that room is not just an honor. It is an affirmation that our approach belongs in the conversation about how the world solves rare disease. Patient-led. Capital-efficient. Scientifically rigorous. We are grateful to the Milken Institute and @fastercures, a Center of the Milken Institute for the platform, and to every patient, family, researcher, and partner whose trust makes this work possible.
🦋 The rules are being rewritten. We intend to help continue to write them.
🎥 Watch the full panel: milkeninstitute.org/content-…
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The world is plunging and Costa Rica went all in from the waterfalls of Bajos del Toro! 🇨🇷
One of our global Plunge for Elodie communities showed up in a big way for kids with EB. It’s a reminder that this movement has reached every corner of the world, united by one mission.
This plunge is powered by the @EliksaTx Therapeutics team, where EB Research Partnership has invested over $1.1M to help develop ELK-003, a first-of-its-kind eye drop designed to protect EB patients from corneal abrasions that can lead to blindness. With a clinical trial already underway and efficacy shown in preclinical models, the science is moving forward and every plunge, in every corner of the world, helps to make it all possible.
Thank you Eliksa for jumping in and showing up for families living with EB every single day. 💙
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