EB Research Partnership

Dear EB community, you are our North Star. ❤️🦋 Your beauty, strength and resilience is something to be celebrated EVERY WEEK. This #EBAwarenessWeek you can support EBRP and the EB community AND get featured in Times Square NYC!!!! All you have to do to get started is donate $25. Head to give.ebresearch.org/hope to learn more. BIG thank you to our friends HOPE Hydration for making this possible. 🙏

This #EBAwarenessWeek, we need your help to make a BIG impact. Get involved, spread EB awareness, donate, and help us raise funds for life-saving research. 🦋 🦋 🦋 Every dollar donated to our #WingsofChange campaign will be DOUBLED up to $250,000. No action and no dollar amount is too small. We can ALL make a difference in the fight against EB. Join us. https://lnkd.in/ed4G_fCP

Longtime EB supporter, Jeff Heddles, has a BIG announcement to make this #EBAwarenessWeek. All donations made to EBRP’s #WingsofChange campaign will be DOUBLED up to $250,000!!! 🦋💥🦋💥 Your donations will support life-saving research and send a powerful message: even the smallest action can help create a monumental impact. Spread the word, share EB stories, fundraise with us, and donate today. https://lnkd.in/ed4G_fCP

Remembering the light and legacy of the late, great entertainer Leslie Jordan. ❤✨ Leslie was a long time supporter and fierce advocate of many causes, including the EB community. 🦋 He coined the phrase Reportin’ for Duty to describe his personal calling to a life of service. We are so grateful for Leslie’s support and honored to continue his legacy with #ReportinForDuty in Nashville next February. Head to ebresearch.org/rfdwaitlist to stay up to date on all things Reportin’ for Duty.

🎲 Go All In for Change for Charley! 🎲 Join us on December 3rd at 8pm ET for an unforgettable night, all from the comfort of your own home! We're bringing the casino to YOU for our first-ever Change for Charley Virtual Casino Night and the stakes couldn’t be higher — together, we’re raising funds to cure EB! With special guest appearances, inspiring stories from the EB community, exclusive auction items, 💵 amazing prizes 💵, and poker lessons for beginners, there’s something for everyone. All funds raised benefit EBRP, so whether you're a poker pro or a total newbie, your participation makes a difference. Let’s go all in for Charley and help find a cure for EB! RSVP at https://lnkd.in/eTp6M8bN

We’re excited to invite you to EBRP’s October Town Hall! 🦋 Join us for a live virtual webinar with the inspiring leaders behind the Plunge for Elodie movement, including Elodie's mom Emily. We'll be discussing how the #PlungeforElodie has grown into an international movement, helps EB families rally their communities, and directly led to progress in the field of EB. RSVP and submit your questions 👉 https://lnkd.in/dABesRju 📆 WHEN: October 28 at 6PM ET 🧐 WHAT: A live Town Hall 🎥 WHERE: Virtually hosted by EBRP 😀 WHO: Kirstian Khitkian, Co-Chair & Co-Creator of the Plunge for Elodie, Emily Kubik, Elodie's mom, Annie & Patterson McKenzie, a rockstar EB family, and Allison McGettigan, EBRP's own Director of Community & Operations 🦋 WHY: To celebrate the impact of the Plunge, connect with our community, and discover ways to get involved

🌟 Exciting Breakthrough in EB Research! 🌟 Researchers at Institut Imagine are working on a promising combination therapy using gentamicin and other compounds to treat Recessive Dystrophic and Junctional Epidermolysis Bullosa. This therapy could offer safer, long-term solutions for patients with nonsense mutations, which account for 11% of gene defects across 5,000 genetic diseases. 💡 If successful, it has the potential to help not just EB patients but many others affected by genetic disorders. Swipe through to learn more about this groundbreaking research and how it could change lives. 🙌💪 Want to help fuel more research like this? Your donation can make a difference in advancing life-changing treatments --> https://lnkd.in/eQ6d_Gc4 #EBResearch #ImagineInstitute #GeneticResearch #HopeForEB #Breakthrough #SaferTreatments #BeyondEB

#LifewithEB: Meet Anisa 💜✨ Anisa, a fearless 5-year-old, lives with DDEB. Each day is a mix of challenges and triumphs as she navigates life with incredible resilience. To support her needs, Anisa’s mom developed unique adaptive clothing that protects her skin and lets her enjoy childhood to the fullest. Now, they’re hoping to help other EB families too! 💪💙 📝 If you or someone you know has EB, take a moment to complete Anisa’s survey on adaptive clothing needs. Together, we can make a difference in the lives of families battling EB. EBRP stands with Anisa and her family on this journey. Join us in raising awareness and funding research for a cure. Take the survey here: bit.ly/LeeAnnesSurvey

🦋 Join The Effect 🦋 Every month, our community grows stronger, more resilient, and more determined. By joining The Effect, you’re not just giving; you’re driving the momentum to find a cure for EB. 💙 🌟 Your monthly donation can fuel groundbreaking research and bring us closer to a world without EB. Even a small monthly donation can create hope in a big way. Join #TheEffect today. https://lnkd.in/eQ6d_Gc4 #JoinTheEffect #CureEB #EBResearch #HopeInAction

Meet JJ Lawlor, a runner with Team EBRP at the NYC Marathon! JJ’s journey into distance running started during the pandemic, and since then, he’s gone from running 5Ks to conquering ultramarathons! After completing his first marathon in 2021, JJ didn’t stop—he tackled a 50k and even the JFK 50-mile Ultra. Now, he's ready to take on the streets of NYC for his next big race. This year, JJ is running for Team EBRP with a deeply personal motivation: his wife’s cousin, Robbie Twible, who has EB. "Robbie is a wonderful, charismatic young man who always finds a way to look on the bright side of life. I’m running for Robbie and for the much-needed treatments and cure for this disease.” On race day, JJ is most excited to experience the energy of the city, running through all five boroughs alongside tens of thousands of runners. We can’t wait to cheer him on as he takes on this iconic challenge for an incredible cause! Support JJ on his race here: https://lnkd.in/ePfNcUDw Your gift will be matched up to $25K #TeamEBRP #NYCMarathon #RunningForACure #EBResearch #EB