EB Research Partnership

EVENT REMINDER! 📆 🦋 We are excited to welcome representatives from Chiesi Global Rare Diseases to our Community Council Webinar this Wednesday, July 10th. We invite you join us to learn more about the company and the resources available to patients through Chiesi Total Care. RSVP today at bit.ly/ChiesiEBRP 📆 WHEN: Wednesday, July 10th at 12PM ET 👩⚕️ WHAT: A live Community Council Webinar with EBRP & the Chiesi Total Care Team 🎥 WHERE: Virtually hosted by EBRP & Chiesi 👋 RSVP: bit.ly/ChiesiEBRP

So thrilled to welcome Katrina Parke and Margot Sosa to Team EBRP!

For Solomon Bonner, the roar of the dinosaur inspires him to be brave in his daily battle with EB. Solomon is fearless, strong, and inspires us to fight every single day to find a cure for EB. We can make EB a thing of the past...just like dinosaurs. And finding a cure for EB can also pave the way to cure thousands of other #rarediseases. You can learn more, donate and help us find a cure at ebresearch.org

Don't forget we'll be hosting a Community Council #Webinar with the Chiesi Global Rare Diseases Team on July 10th! You can RSVP today at https://bit.ly/ChiesiEBRP 📆 WHEN: Wednesday, July 10th at 12PM ET 👩⚕️ WHAT: A live Community Council Webinar with EBRP & the Chiesi Total Care Team 🎥 WHERE: Virtually hosted by EBRP & Chiesi 🦋 WHY: To educate patients and families on Chiesi Global Rare Diseases and resources available through Chiesi Total Care

#LifewithEB: Meet Demah. Demah has #JunctionalEB and was struggling with painful and severe corneal abrasions. Below Demah’s mom, Elizabeth, shares their experience on finding a solution to help battle this difficult complication that often comes with EB. EBRP is proud to have funded Eliksa Therapeutics who is actively working to enter a clinical trial for their treatment to help with corneal abrasions. Read more below. 🦋❤️ ––––– When Demah turned 18 months old, she had her first eye abrasion. Over the months that followed, they began to increase in frequency. We tried everything: contact bandages, punctual plugs, steroids, applying lubricating eye drops every hour on the hour, visiting specialists across the country – nothing worked. By the time she was 3 years old, she was experiencing an eye abrasion at least twice a month and couldn’t open her eyes for 10 days at a time. We felt frustration, confusion and fear as we watched her miss out on birthday parties, school, meeting her baby brother for the first time and more. All because she couldn’t open her eyes and was in excruciating pain. In November 2023, I read that Eliksa Therapeutics was working on an eye drop that would help those with EB experiencing corneal abrasions. I felt a spark of hope and reached out to them immediately. I met with the CEO, Armen Karamanian, and shared our daughter's story. He listened empathetically and informed me about the therapeutic nature of using amniotic membrane (AM) to help heal the eye and cornea. While Eliksa is currently working on a product that could be used in the US where we live, it still needs to go through FDA approval. So, he generously put me in touch with the Veneto Eye Bank in Venice, Italy. The doctor there had recently published a medical journal describing how a child with Non-Herlitz Junctional EB had essentially stopped experiencing chronic corneal abrasions after taking AM eye drops for two months. These eye drops could not be shipped to the US as they are not approved under the FDA. We would have to go get them. So, as a family, we decided to take a leap of faith and flew to Italy to meet with the doctor and receive these eye drops. Our daughter has been on the eye drops 1.5 months now and so far is doing beautifully. It is obviously challenging to fly overseas to receive treatment, but we felt it was crucial to let patients and caregivers know that there is hope. Treatments are also coming here to the US for those experiencing corneal abrasions. In fact, while Eliksa Therapeutics is working on the AM eye drops for US distribution, there are currently AM discs available that can be applied by healthcare providers similar to contact lenses and may provide relief for EB patients. If you are or someone you know is experiencing debilitating corneal abrasions– we urge you to ask your ophthalmologists about using AM discs - or reach out to EBRP to see if the AM eye drops overseas is the right step for you. – Elizabeth, Demah's mom

Want to help us find a cure for EB? Join #TheEffect and give to EB Research Partnership monthly. 🦋 Every dollar makes a difference and can help us continue to fund the most innovative research and projects around the world using #VenturePhilanthropy. 🦋 Your support can continue to advance life-saving treatments and ultimately find a cure for EB. 🦋 Supporters who are part of #TheEffect get access to benefits like EBRP merch, first dibs on #NYCMarathon bibs, first access to upcoming EBRP events, and more. Donate today and learn more at ebresearch.org

RESEARCH HIGHLIGHT 🦋🧬🔬 In a new article published in #ScienceDirect Journal researchers assessed #genotypes and #phenotypes from 83 individuals living with RDEB using 🧬 #genetic testing, 📸 standardized photos, and 🏥 clinical outcomes. We are proud to be a funder of this impactful study. Read more below or the the full article at bit.ly/ScienceDirectEBRP GOAL OF STUDY 🔍 🧬 The goal of the study was to understand how various mutations in the COL7A1 gene affect patient outcomes and explore a new way to group patients based on their mutations. OUTCOME 👩⚕️🦋 Certain mutations were associated with more severe disease manifestations. Researchers have identified the need for further validation in larger cohorts, however, the hope is that this can be used to identify patients who are at the highest risk of severe outcomes and provide more personalized support, care and guidance to patients. Stanford University School of Medicine Cincinnati Children'sInstitute of genomics and integrative biology (CSIR) VA PALO ALTO HEALTHCARE SYSTEM

EVENT ANNOUNCEMENT! 💥💥💥 For one night only Scotia Rose, Wayside and other guests will come together on the extraordinary The Cutting Room stage to raise awareness and funds for EB Research Partnership. In addition to incredible live music and performances, this show will also feature moving speeches by EB families and advocates, an exciting auction, and limited edition posters & merch. Grab your tickets, tables and sponsorships before they sell out! https://lnkd.in/eVkdSxxS 📆 WHEN: Thursday, September 5th at 7PM 🎸 WHAT: An epic benefit show 📍 WHERE: The Cutting Room, NYC 🦋 WHY: To raise funds and awareness for EB Research Partnership

Michael Hund, CEO of EB Research Partnership and graduate from Yale School of Management, will join the Yale Ventures Startup Speaker Series on Tuesday, June 25th at 12PM ET to discuss his journey as a mission driven #entrepreneur and the innovative #VenturePhilanthropy model we use to drive impact at EBRP. This session will be full of insights and inspiration for supporters and aspiring entrepreneurs alike. 🦋 ⚡ 💡 RSVP here: https://lu.ma/1ku32tza

We’re excited to welcome representatives from Chiesi Global Rare Diseases to learn more about the company and the resources available to patients through Chiesi Total Care. 📆 WHEN: Wednesday, July 10th at 12PM ET 👩⚕️ WHAT: A live Community Council Webinar with EBRP & the Chiesi Total Care Team 🎥 WHERE: Virtually hosted by EBRP & Chiesi 🦋 WHY: To educate patients and families on Chiesi Global Rare Diseases and resources available through Chiesi Total Care RSVP today at bit.ly/ChiesiEBRP