EB Research Partnership

🙏💙🦋 EBRP #12 DaysofGratitude | DAY 3 ⭐💙 Because of YOU, EBRP continues to lead the way! This year, we received top ratings from three independent charity platforms - Charity Navigator, Affinity, Candid. Together, we’re building trust, transparency, and a brighter future for the EB community. #12DaysOfGratitude ebresearch.org/2024

🙏💙🦋 EBRP #12 DaysofGratitude | DAY 2 🎤🌟 Nashville brought the magic this year with the 2nd Reportin’ for Duty show! Featuring incredible performances by EBRP co-founder Eddie Vedder, friend Post Malone, and so many more. We raised over $1M for EB research and made some incredible memories. Thank you to all the artists for sharing your talents with us and everyone who joined us in making it a night to remember! 💙 #ReportinForDuty #12DaysOfGratitude ebresearch.org/2024

🙏💙🦋 EBRP #12DaysofGratitude | DAY 1 🎄✨ Welcome to our 12 Days of Gratitude! As we reflect on 2024, we’re filled with appreciation for this incredible community driving toward our bold mission to accelerate treatments and a cure for EB. Together, we’re creating a butterfly effect that will transform the lives of those impacted by EB and 10,000+ other rare diseases. We’re so thankful for the brilliant medical experts working tirelessly to find a cure, our visionary Board and Co-Founders - Eddie and Jill Vedder - for their leadership, our generous supporters for fueling this journey, and the courageous families facing EB who inspire us every single day. 💙 Let’s celebrate the progress we’ve made and the hope we share for the future! See more about our #12DaysOfGratitude at ebresearch.org/2024 Michael Hund, EB Research Partnership (Australia), Door Knocker Media, One Twenty Eight, GWS GIANTS, SPECIAL BOOKS BY SPECIAL KIDS INC

At our November Town Hall, we heard from Elizabeth Hoffman about her daughter Demah’s incredible journey to overcome severe eye abrasions caused by junctional EB. ✨ Thanks to determination and innovative therapies like amniotic membrane and autologous serum eye drops, Demah is now abrasion-free and thriving. 💙 We also heard from Victoria Prieto at Eliksa Therapeutics, whose groundbreaking work is driving these life-changing solutions forward, giving hope to EB families around the world. Together, we’re pushing boundaries and creating a brighter future. Learn more at the [ https://lnkd.in/eAGTMs-v ]

So obsessed with Armando and Sarah's EB love story 🦋 ❤️ https://lnkd.in/gU8iMzpQ

We are so grateful to Chris and the entire Special Books by Special Kids community for their continued support of our mission. 🦋 🦋 🦋 Thanks to the generosity and dedication of many, there has been remarkable progress on our journey towards a cure. Today there is hope, there are two FDA-approved treatments for EB are now available and Noah is one of the children benefiting. One of these treatments is healing the wounds on his feet, allowing him to walk with greater ease. Thank you to everyone who has contributed, you are literally helping Noah walk. You can support, watch Noah's story and learn more here: https://lnkd.in/ee6uA-7C

EB Research Partnership co-founders Eddie Vedder & Jill Vedder share how inspired they are by the EB community. There is remarkable momentum being made on our journey to find a cure for EB – and beyond. This #GivingTuesday, your gift can create a monumental impact - thanks to a incredible match from a generous donor, every donation up to $250,000 will be DOUBLED! Every dollar raised supports life-saving research for Epidermolysis Bullosa and helps drive meaningful change for the entire rare disease community. Donate, fundraise, or share this video to help us create a butterfly effect of hope and progress. ✨ Donate now: https://lnkd.in/eVDgPiUn #GivingTuesday #CureEB #EBResearch #WingsOfChange

Epidermolysis Bullosa (EB) is a rare genetic disorder that makes skin as fragile as a butterfly’s wing. Even a hug or a simple touch can cause painful blisters and wounds. EB is caused by missing proteins that should hold layers of skin together, leading to severe challenges for those living with it. While there’s currently no cure, we’re fighting to change that. 🦋💪 This #GivingTuesday, learn more about EB and help us fund the research that’s moving us closer to life-changing treatments and, one day, a cure. Together, we can make a difference for those living with EB. ❤️ #EBResearch #CureEB

 "The best thing that I get a chance to hear is, 'you and your organization give us hope'.'" – Michael Hund CEO of EB Research Partnership In this episode of the Grace, Grief, and Grit podcast, EBRP CEO Michael Hund shares the mission and impact of our work as the largest global organization dedicated to treating and curing epidermolysis bullosa (EB). Michael reflects on the power of hope in the EB community, the innovative research projects advancing treatments, and how everyone can play a role in supporting our mission to cure EB. Listen now: https://lnkd.in/d5B4QSE2

We at EB Research Partnership (Australia) were honored to gather at the historic Cranlana, hosted by Sally Lindsay of the Myer Family, to raise awareness and support for those living with EB. Surrounded by the beautiful gardens and joined by our CEO Michael Hund, EB families, medical leaders, and remarkable artists, we celebrated EBRP's progress and shared our vision for a world free from EB by 2030. This night was especially meaningful as we honored Deanna Molinaro, an artist and a warrior in the EB community. In a touching tribute, artist Mariana Mezic brought Deanna’s spirit to life through a painting, capturing her resilience. If you'd like to bid on the piece, head here: https://lnkd.in/gyuCAxjv Thanks to everyone who joined us to make this night unforgettable. Together, we are driving change. 🦋🦋🦋