EB Research Partnership

Eddie and Jill Vedder have been dedicated advocates for the Epidermolysis Bullosa (EB) community for many years. The Vedders are joined by many supporters from around the world for the #WingsofChange campaign raising awareness and funds for EB Research Partnership. We can ALL make a difference in the fight against EB. Every dollar donated to EBRP's #WingsofChange campaign will be DOUBLED up to $250,000. Learn more and get involved at https://lnkd.in/eiDni2eK Select photos by: Tim Durkan and Danny Clinch

Fazeel is a young man living with Recessive Dystrophic Epidermolysis Bullosa, or RDEB for short. Fazeel is funny, smart, determined, and beats the odds every chance he gets. At EB Research Partnership, our goal is to cure Epidermolysis Bullosa (EB) by 2030. 🦋🦋🦋 We are honored to have Hannah Simone and Fazeel join us in raising awareness and funds to find a cure. You can support our mission and EB warriors like Fazeel around the world today. All donations made to #WingsofChange will be DOUBLED up to $250,000. Spread the word, get involved, and donate. https://lnkd.in/dkPfAtRh

Celebrate Deanna’s Legacy Through Art 🦋 Deanna Molinaro was an artist, an advocate, and a warrior in the EB community. We are honored to continue celebrating her legacy with a commissioned piece by artist Mariana "Mez" Mezic. Mez’s stunning portrait captures Deanna’s fearless spirit—surrounded by butterflies, warrior arrows, and hearts, symbols of her tenacity and the love she inspired. All proceeds from this auction will support life-changing research through EBRP, committing to a future without EB. Let’s keep Deanna’s fight alive. 💜 Place your bids here 👉 https://lnkd.in/gyuCAxjv

💥 Exciting news from Abeona Therapeutics 💥 The FDA has accepted Abeona’s BLA resubmission for prademagene zamikeracel (pz-cel) in recessive dystrophic epidermolysis bullosa (RDEB) with a PDUFA target action date of April 29, 2025. Read more here: https://lnkd.in/esq5a4nU

🗓️ EBRP Events in November 🗓️ From EBRP marathon runners to an educational garden party, November is already off to a smashing start! We're excited to keep the momentum going with impactful events that bring us closer together and support our mission. Join us in making a difference this month. 💙 🏃 NYC Marathon | November 3, 2024 Thanks to everyone for cheering on Team EBRP as they raced to raise awareness and funds for EB! You can still support these runners today. [ https://lnkd.in/gKCEqxpg ] 🍸 Cocktail Party at Cranlana | November 10, 2024 We loved seeing you all at our evening of cocktails and community on Sunday at beautiful gardens of Cranlana in Melbourne. You can now bid on exclusive art from this event at [ bit.ly/EBRPNovAuction ] 🎬 EBRP Australia Film Premiere | November 14, 2024 EBRP Australia will premiere Beneath the Skin, a moving film about living with EB. Show your support at [ https://lnkd.in/grPyM5B2 ] 👥 Monthly Town Hall | November 26, 2024 Stay updated on our latest advancements and connect with the EBRP community. [ https://lnkd.in/ghBwNmxa ] 🎲 Change for Charley Virtual Casino Night | December 3, 2024 Bring your best poker face to this virtual casino night in support of EB research! [ https://lnkd.in/geGukWeM ]

🌊 At our October Town Hall, we celebrated the remarkable achievements of the Plunge for Elodie community, a global movement raising awareness and funds to cure EB, one splash at a time! Emily Kubik, Elodie's mom, shared her mission to find a cure, and how her friend Kristan co-founded the Plunge with a simple goal that turned into a $2.5 million success story. 💪 Patterson, a young EB warrior, and his mom Annie inspired us with their own Seattle Plunge, rallying hundreds in their community for this powerful cause. ✨ Want to join? Whether it’s an ocean dive or a creative indoor plunge, every effort brings us closer to a cure. Learn more here 👉 https://lnkd.in/eT4AGgu8

🦋💙 DEB & JEB community members can share insights and earn $100! 🦋💙 Our partners at MedPanel, Inc are inviting individuals in the U.S. affected by Dystrophic and Junctional Epidermolysis Bullosa to participate in a 30-minute survey. Whether you're living with dystrophic or junctional EB or a caregiver, your insights are crucial to improve diagnosis and treatment, especially for those managing Junctional and Dystrophic EB. Take the survey here 👉 https://lnkd.in/equHnCdY

Together, we’re creating real change. 💙 When EBRP started, the dream of curing EB felt like a long road ahead. Today, thanks to incredible families, tireless researchers, and generous supporters, we’re closer than ever - we have raised over $70 million, funded 150+ projects globally, and have seen two FDA-approved treatments for EB become a reality! 💪🦋 But we’re not done yet. All donations made to EBRP’s #WingsofChange campaign will be DOUBLED up to $250,000! 🦋💥 Your support fuels life-saving research and sends a powerful message: even the smallest action can help create monumental impact. We're over halfway to our goal, so help us reach it! Spread the word, share EB stories, fundraise with us, and donate today: https://lnkd.in/eakb2Mkp Together, let’s make a difference. 💙

🌟 Exploring Dual Therapies at USC 🌟 At the University of Southern California, researchers are testing a promising combination: SRI-41315 and gentamicin. 🧬 Gentamicin is a drug that can correct certain genetic mutations. 💊 SRI-41315 could make gentamicin safer and more effective in treating EB because it could reduce the toxicity associated with current gentamicin treatments. Over the next few years, this project will move from lab testing to potential clinical trials. Not only could this benefit EB patients, but it also holds promise for other chronic itch conditions, benefiting patients with various skin disorders. Help turn this hope into reality by donating to the #WingsOfChange campaign, where every dollar will be matched up to $250k! Join us at https://lnkd.in/ed4G_fCP #EBResearch #FindACure #HopeForTheFuture #USCResearch

Big #EBAwarenessWeek update out of EB Research Partnership (Australia) 🦋 So grateful to the entire team at The Royal Children's Hospital Foundation Melbourne and The Royal Children's Hospital for their dedication to the EB community and their partnership. We look forward to continuing to work alongside them to help fast-track heading for the EB community in Australia.