EB Research Partnership

Graham is a young boy from Utica living with EB. 🦋❤ Anyone who has the pleasure to meet Graham can immediately see his remarkable amounts of warmth, joy, bravery and strength. These traits have inspired many in the local community to support Graham, spread awareness, and help raise funds for EB Research Partnership. The Robertello family has been relentless in their advocacy for Graham and all those living with EB. We're proud to fight alongside them until a cure for EB is found. Read their story here: bit.ly/Graham2024

Meet Dr. Jean Tang and Dr. Anthony Oro from Stanford University School of Medicine . 🦋 EBRP is proud to support brilliant researchers and clinicians, like Jean and Tony, working around the clock to find a cure for EB. With your support we will continue to fund life-saving research around the world. Learn more and donate to support our work here: https://lnkd.in/eju-Qbwb

John Hudson and Special Books by Special Kids continue to show the world the true power of courage, community, grit and hope. 🦋 💪 🦋 John Hudson has advocated for a cure for EB since his youth, hoping that children of the future will never know the same pain that has left him bedridden.  🧬 Just a few weeks ago he received his first dose of the first-ever FDA-approved treatment for EB. 🔬 EBRP invested in this treatment that John Hudson talks about in this latest video back in 2017. 👊 EBRP will not stop fighting alongside him until a cure for EB is found.  💥 Donate in honor of John Hudson to help us fund life-saving EB research for John and everyone around the world battling EB. https://lnkd.in/eSfux32h

A few days ago, Chris of Special Books by Special Kids published John Hudson’s fifth interview on SBSK since they first met in 2018. This video series has raised over $330,000 for EB Research Partnership! 🙏🙏🙏 We are so grateful everyone who has contributed over the years and especially to John Hudson for his fearless advocacy. 🦋❤️ You can watch the latest interview and support life-saving research here: https://lnkd.in/e_kypJGZ

From participating in clinical trials to sharing his story with the world, John Hudson has been a fearless advocate and warrior in his 22 year battle with EB and continues to be a force for awareness and progress for everyone living with EB around the world. 💥🦋 For more than 6 years, John Hudson and Chris of Special Books by Special Kids have been raising awareness and funds for EB research together, and their work has contributed to incredible progress. In 2023, we saw the first-ever FDA approved treatment for EB become a reality. This is a treatment EBRP invested in back in 2017. John Hudson discusses this treatment and more in their latest interview. Watch it here: https://lnkd.in/ehBpnT8R

Thank you to former German President and First Lady, Horst and Eva Luise Köhler, for inviting our CEO Michael Hund to keynote their Eva Luise and Horst Köhler Foundation for People with Rare Diseases #RareDisease Symposium in Berlin. It was a phenomenal two days of "Rethinking Rare". We were honored to join EB pioneer Prof. Dr. Leena Bruckner-Tuderman of the The University of Freiburg, DEBRA Germany patient advocate Andreas Miller, and other leaders across the government, medical and philanthropic sectors to discuss how we can accelerate treatments and cures for the communities we serve. Special thank you to the brilliant leaders and speakers who joined for sharing insights, ideas and learnings – we look forward to continuing to work alongside you.

RESEARCH HIGHLIGHT 🔬 ⚡  In an extraordinary leap in medical innovation, the team at University of Colorado is developing a game-changing and curative approach for EB that utilizes the patient's own skin cells transformed into supercharged stem cells and delivers them with a cutting-edge "spray-on-skin" system with ~$1M+ in funding from EBRP. COLLABORATION 🤝  INNOVATION Building off the innovative and collaborative work done via the EB iPS Cell Consortium, in partnership with Columbia University and Stanford University, this groundbreaking project is pushing the boundaries of medical technology. It's gearing up to make advanced stem cell therapy more accessible and commercially viable. You can read about all the research we fund at ebresearch.org/our-impact

This Mother’s Day we’re honored to share a perspective from EB mother, Aisha, on what it means to be a mom advocating, fighting and celebrating her daughter Caroline who was born with severe Junctional EB. Thank you to all the remarkable moms and mother figures who support everyone living with EB. ❤️🙏🦋 On October 26, 2023, EB awareness day, Caroline Georgia was born - call it fate. Each month on the 26th, we celebrate Caroline's life with cake, cherishing the precious moments. With EB, there's no hiding—it compels vulnerability, making presence a necessity. Caroline, now approaching six months, will soon begin treatment. She delights in morning stories, is ticklish, and adores observing her siblings. Caroline is spirited, wise, beautiful, and courageous—a true butterfly girl, and I am so lucky to be her mother. Through EB, I lost and found myself—a better woman, a better mother. It's here, in this journey with Caroline Georgia, that I discovered the boundless love of a mother—unyielding, unstoppable, and beautifully relentless.

A few weeks back I had the profound honor to keynote the Amazon Web Services (AWS) IMAGINE conference in Washington DC along with First Lady of the United States Dr. Jill Biden, TED Conferences Curator Chris Anderson, and Rainforest Connection (RFCx)'s Bourhan Yassin (all brilliant and inspiring leaders!). Beyond grateful to share our innovation model at EB Research Partnership and how together we can run like buffalo to accelerate change, impact, and solutions for our missions. Big thanks to the EB community we serve for the inspiration, Jill and Eddie Vedder, Lauren Stovall (absolute hero and legend), David Levy, Allyson Fryhoff, Larkin Timmerman, Katherine (Kacey) Hertan, Scott Glasser, Sarah Fox and the whole AWS squad. Video: https://lnkd.in/eQZupkkE Press Release: https://lnkd.in/d9CaB4i9

We are just 4 weeks away from the 3rd Annual Hallie Grace Memorial Butterfly Ball! 🦋🥳 This beautiful event will take place on June 7th in celebration of what would have been Hallie Grace's 3rd birthday. Hallie was born with Junctional EB. Hallie was a true warrior and inspiration to many, but she won her battle and flew Home on September 8 of the same year at only 3 months, 3 days old. To honor Hallie's legacy, her family created the nonprofit Heroes for Hallie Grace and their signature event, the Butterfly Ball. 100% of the proceeds will go towards the fight against EB! Come join us for a fun and fantastic night featuring a live butterfly release, delicious dinner service, live music by Hooked like Helen, DJ and dancing, a photo booth, a silent auction, and much more! Head to HallieFlies.com for more information. https://lnkd.in/ewA6Ukuy Video by Devin Olson Media