EB Research Partnership

Our CEO, Michael Hund, had the pleasure of speaking with the Yale School of Management community in the latest Yale Ventures #Startup Speaker Series. In this session Michael covered the principles he learned in the Flint Hills of Kansas that guide his personal and professional life to the principles of our #VenturePhilanthropy model that drive impact at EB Research Partnership. Read more takeaways from the session here: https://bit.ly/MHundYale

And just like that our first #research grants of the year are out the door! 🦋💥🔬 So far in 2024 alone we have awarded over $3M+ towards 10 life-saving projects. Their innovative approaches span the fields of cancer research, drug repurposing, data, technology, and more. With your support, EBRP aims to nearly DOUBLE this impact in our upcoming and final grant cycle of the year. Donate today so we can continue to fund projects to find a cure for EB – and beyond. 🧬 ⚡️ https://lnkd.in/eMxGpBpy

Our CEO, Michael Hund, recently engaged with the @YaleSOM community during the Yale Ventures #Startup Speaker Series. He shared insights from his experience growing up in Kansas and discussed how these have helped shape the #VenturePhilanthropy model we use to drive meaningful progress in curing Epidermolysis Bullosa. Read more here: https://lnkd.in/eZcWKEBp

When their son Wesson completed his battle with EB on September 5th, 2021, Jake and Jordan Eaves turned their heartbreak into hope by founding Wesson’s Wish. In raising EB awareness, funding vital research, and supporting families affected by EB, this incredible organization is a love letter to Wesson and his legacy in action. 🦋❤ To support their mission and bring us closer to a cure, Wesson’s Wish is excited to announce the return of their Golf Tournament! 💥 ⛳️ 📆 The second annual Wesson’s Wish Golf Tournament will take place at Gleannloch Pines Golf Course in Spring, Texas on October 15th. Last year this amazing event raised $55,000 and this year aims to be bigger and better with a goal of $70,000, so join us for a day of fun and fundraising! Learn more and sign up: wessonswish.com

Beautiful rendition of Eddie Vedder’s “Matter of Time,” written for the EB community and performed by Joy Oladokun at our 2022 #VentureIntoCures digital show. Since this show aired, we’ve granted millions of dollars to fund life-saving research around the world. We’ve also seen not one, but two FDA approved treatments for EB. But we’re not stopping until we find a cure. Donate today to support this work by going to ebresearch.org.

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