EB Research Partnership

✨September Town Hall Recap✨ During our September Town Hall, the EB community shared stories of resilience and progress. Humphrey Hanley inspired us all by speaking about his journey with EB and the importance of hope in facing challenges like squamous cell carcinoma (SCC). Dr. Andrew South of Thomas Jefferson University updated us on exciting advancements in SCC research being funded by EBRP, bringing us closer to life-changing treatments. Read the full recap from the Town Hall now --> https://lnkd.in/dApFf-bM 💙

📣 Exciting news! 🎉 Thanks to our partners at Chiesi Global Rare Diseases, every dollar you donate to support our incredible Team EBRP NYC Marathon runners will be MATCHED up to $25,000. 💙 🏃♀️💪 These runners are taking to the streets of NYC to race towards a cure and your donations to support them will now be making TWICE the difference. Donate today at https://lnkd.in/e57WTBtn #NYCMarathon #CureEB #DoubleTheImpact #DonateNow

🗓️ Upcoming EBRP Events 🗓️ As 👻 spooky 🎃 season swings in, there's nothing to fear at EBRP—we're all about positive impact and community engagement! Here's what's coming up: 🏌️♂️ Wesson's Wish Golf Tournament 📅 October 15, 2024 | 🕙 10 AM CT | 📍 Spring,Texas  https://lnkd.in/dzXnEj3E 👥 Monthly Town Hall 📅 October TBD | Virtual on Zoom https://lnkd.in/emqgFnEG 🦋 EB Awareness Week 📅 October 25-31, 2024 Let's connect, learn, and play our part in making a difference! 💙 #EBResearch #GolfForACure #EBawareness

✨ Q3 2024 Research Applicants Overview ✨ We're excited to introduce this quarter's innovative projects applying for funding in our relentless pursuit of treatments and a cure for Epidermolysis Bullosa. Each of these applicants is pushing the boundaries of science, tackling EB with groundbreaking research in gene therapy, stem cell therapy, drug development, and more. With over $6M in funding requested, here are just a few highlights: 🔬 Topical COL7A1 Gene Delivery – Aiming to improve gene therapy treatments for Dystrophic EB 🧬 Skin Organoids-on-Chip – Exploring human skin organoids to target RDEB 💉 Losartan for RDEB – Investigating new treatments for pain and wound healing 💊 Nonsense Readthrough Therapeutics – Advancing small molecule therapeutics for DEB and JEB 🌱 Cancer Research – Targeting EB-associated squamous cell carcinoma We can’t wait to see how these groundbreaking studies will propel the EB research community forward. Support exciting research like this by donating today 👉 https://lnkd.in/eQ6d_Gc4 #EBResearch #CureEB #ResearchForACure #ScienceInAction #EBInnovation #GeneTherapy #StemCellTherapy

✨ What a night! ✨ A huge thank you to our amazing community for coming together and helping to raise vital funds and awareness for EB. 💙 One of the night’s most unforgettable moments was when EB mom and caregiver Kelsey shocked the crowd with her epic performance alongside the band Scotia Rose! 🎤🙌 Your support is bringing us closer to a cure. https://lnkd.in/eQ6d_Gc4 #EBResearch #CuttingRoomEvent #TogetherForACure

At EBRP, our #VenturePhilanthropy model was born out of a mistake—but that mistake became a catalyst for innovation. As CEO Michael Hund shares, unlike traditional funding, this approach is a powerful blend of strategic investment and philanthropy, specifically designed to accelerate the path to a cure for EB. Here’s how it works: 1️⃣ Philanthropy sparks the process. 2️⃣ We collaborate with the research community and our expert Scientific Advisory Board to identify promising projects. 3️⃣ EBRP steps in to negotiate and fund venture deals. 4️⃣ These projects move toward commercialization, with any returns on investment being directed right back into more research funding. This cycle continues until a cure is found, creating a sustainable loop of impact that brings us closer every day to a world where EB is a thing of the past. 💙 With partners like the Chan Zuckerberg Initiative , we’re not just making progress—we’re paving the way for a new era in rare disease treatment. #VenturePhilanthropy #CureEB #Innovation #EBResearch #Philanthropy #RareDisease #Research

🏉 THANK YOU, GWS GIANTS 🧡 While the GIANTS season may have ended, the impact you've made continues to inspire. A huge congratulations on an incredible season. Your determination on the field is matched only by your unwavering commitment off the field, helping us raise awareness and vital funds for EB research. We’re so grateful for your partnership and the difference you’re making in the lives of those affected by EB. 🙏💙 Let’s keep pushing forward together! 🌟 #CureEB #ThankYouGiants #AFLGiants #EpidermolysisBullosa #TeamEB

🦋 Join The Effect 🦋 At EBRP, small actions lead to monumental changes—just like a butterfly flapping its wings causes a tornado. Every donation helps us get one step closer to finding a cure for Epidermolysis Bullosa. 🌟 Be part of the effect. Your contribution can help transform lives. Together, we will find a cure for EB and lead the way for all rare diseases. https://lnkd.in/eQ6d_Gc4 #DonateToday #CureEB #TheEffect #EBResearch #HopeInAction

We’re excited to invite you to EBRP’s September Town Hall! 🦋 Don’t miss this chance to engage with the EB community, hear from top experts, and dive into the latest advancements in research. You’ll have the opportunity to submit your questions and be part of an open discussion with leading voices in the field. This month, we’ll be joined by Humphrey Hanley, Vice President of DEBRA International, and Andrew South, PhD, a leading EB researcher from Thomas Jefferson University whose exciting work EBRP has proudly funded. We’ll be discussing the complications of EB as people get older, squamous cell carcinoma, and emerging therapies in this critical area. RSVP and submit your questions 👉 https://lnkd.in/e9JQkVde 📆 WHEN: September 24 at 5 PM ET 🧐 WHAT: A live Town Hall with Humphrey Hanley & Dr. Andrew South 🎥 WHERE: Virtually hosted by EBRP 🦋 WHY: To learn more about EB and the therapies that could change lives

We’re excited to share that in 2024 alone, we’ve funded over $3M across 10 groundbreaking projects, each pushing the boundaries of what's possible in the fight against Epidermolysis Bullosa (EB). And we're just getting started! From drug repurposing to stem cell therapies and cancer research, these projects are making waves across all EB subtypes. With 20% already in clinical trials, the future is brighter than ever for those living with EB. But we can’t stop here. Our final research cycle of the year is opening soon, and we're aiming for even greater impact. ✨ Donate today and join us in our mission to cure EB! ✨ https://lnkd.in/eQ6d_Gc4