EB Research Partnership

Sign up today for the 4th Annual Grateful for Graham 5K Run & Walk and help raise critical funds for EB research and awareness. This annual event is more than a run—it’s a movement of hope and action. 👟🦋💙 This year, we are looking for virtual participants from all 50 states to run or walk alongside us here in Utica, NY! Register for both in-person and virtual bibs here 👉 https://lnkd.in/eYJfRTYs MARK YOUR CALENDAR 🗓️ SET A REMINDER 🔔 SPREAD THE WORD! 🗣️ We can’t wait to see you all on May 3! 🏃🏾🏃🏼♂️🧑🦽🏃♀️🏃🏿♀️👩🦽🏃🏽♀️🏃🏽 #GratefulForGraham #GrahamsGang #EBAwareness #RunForACure #HealEB #CureEB #EBResearch

We are thrilled to share that EB Research Partnership has been selected as one of the outstanding nonprofit organizations for the TechToTheRescue AI for Changemakers Accelerator Program—organized in collaboration with AWS AI and Google.org! As one of the 32 organizations chosen for the #AIforHealth cohort, we will embark on an AI learning and innovation journey over the next few months, working alongside tech companies providing pro bono support. Learn more about the program, the other cohorts, and how you can get involved in AI for Changemakers here: https://bit.ly/3TYeBgi #TechForGood #TechToTheRescue #AIforChangemakers #AIforGood

Our first Live Town Hall of 2025 was an enlightening discussion of the journey from bench to bedside care for EB, with three insightful points of view! Hosted by EBRP CEO Michael Hund, this Town Hall featured three incredible speakers: 💙 Kate Holler, EB mom and advocate, shared her family’s journey with EB and discussed navigating the medical system, locating the right resources, and finding life-changing support. 🏥 Dr. Jamie Feinstein, University of Colorado and Children’s Hospital Colorado, talked about how collaboration across a variety of specialties can improve quality of life for EB patients. 🧬 Dr. Ganna Bilousova, University of Colorado, presented groundbreaking work on gene therapy using IPS cells, skin organoids, and spray-on skin technology. Don’t miss this inspiring discussion on EB care, treatment, and research! 🎥 Watch on our site: https://lnkd.in/gMfCVqCe 📺 Watch on YouTube: https://lnkd.in/gKBB6mXm Register for our February Live Town Hall here 👉 https://lnkd.in/ghBwNmxa

Mark your calendars for EBRP’s February Town Hall! 🦋 Join us for a live virtual webinar with Nathan Burmeister, EB dad and Chair of EBRP Australia; Dr. Allison Cowin, a leading researcher in the Australian EB space; and Allison McGettigan, EBRP Director of Programs. This month, we’ll be discussing the team care approach to EB, innovative cell-free wound therapy for all EB subtypes, and new research and community event initiatives. RSVP and submit your questions 👉 https://lnkd.in/ghBwNmxa 🗓️ WHEN: Tuesday, February 25, 5PM EST ➡️ WHAT: Live Town Hall 🎥 WHERE: Virtually hosted by EBRP 😀 WHO: Nathan Burmeister, EB dad and Chair of EBRP Australia; Dr. Allison Cowin, Professor of Regenerative Medicine at the University of South Australia; and Allison McGettigan, EBRP Director of Programs 🦋 WHY: To educate all members of the EB and EBRP community on the exciting work we are doing and answer any questions

Are you or a loved one struggling with EB-related itch? Northwestern University will be conducting a clinical trial to study the effects of dupilumab on itch in EB patients—and travel reimbursement is now available! 🧬✈️ Available for up to 10 participants, travel reimbursement is up to $1700 for each visit to Chicago for the individual with EB and for a companion. The clinical trial also offers up to $1920 compensation for participation in the study. The Northwestern clinical trial is open to people with EB between the ages of 6 months and 70 years who suffer from skin itch as a result of EB. The study may take up to 26 total months of treatment and observation, and will include 4 visits to Chicago. Learn more here 👉 https://lnkd.in/eSAshrsK or email Lydia.rabbaakhabbaz@northwestern.edu #HealEB #CureEB #EBResearch

Sign up for the Second Annual Wesson’s Wish Clay Shoot by Saturday, February 1st, and take part in this incredible fundraiser held in honor of Wesson Eaves! Sponsorship opportunities are also still available! 

 Wesson’s parents, Jake and Jordan Eaves, founded Wesson’s Wish in 2021 to fund EB research, create new awareness, support families affected by EB, and make sure the fight toward a cure never lets up. Last year’s inaugural Wesson’s Wish Clay Shoot raised over $17,000—let’s shoot for even more this year! 🙏💙🦋

 Sign up today! donorbox.org/events/708841

 Second Annual Wesson’s Wish Clay Shoot
 🗓️ WHEN: February 20, 2025 
 📍 WHERE: Westside Sporting Grounds in Katy, Texas 

 Learn more about Wesson’s Wish: wessonswish.com

 #HealEB #CureEB #EBResearch

This month’s newsletter features our January Town Hall, a heartfelt book written by a special EB mom, a new clinical trial opportunity at Northwestern University, the 8th annual Plunge for Elodie, and much more! 🙏💙🦋 Each month, EB UPDATE provides the EB community with valuable info on upcoming EBRP events, clinical news, research updates, community resources, and EBRP happenings. If you’re not already signed up, sign up today! 👉 https://lnkd.in/eEw36MNG #HealEB #CureEB #EBResearch

Congratulations to our fearless leader, Michael Hund, on being awarded the Top CEO of the Year in Medical Research by International Association of Top Professionals (IAOTP) for his outstanding leadership, dedication, and commitment to the healthcare industry. 🏆 From all of us that know and work with Michael on a daily basis, we could not ask for a more committed, empowering, and visionary leader to guide our efforts to help achieve new progress in treating EB and working to find a cure. Read more about this prestigious award from the IAOTP here! 👉https://lnkd.in/eqH2kauR Congrats Michael! 👏 💙 🦋 #HealEB #CureEB #EBResearch

Last call to sign up for our January Town Hall! 🦋 Join us today, Thursday, January 30th at 5PM EST, for a live virtual webinar featuring an amazing panel, including Kate Holler, mom to Rowan and passionate EB advocate, Dr. Jamie Feinstein of Children's Hospital Colorado, Dr. Ganna Bilousova of University of Colorado, and Michael Hund, CEO of EBRP! We'll be discussing bench to bedside care for EB patients with currently available tools and resources, as well as innovative work being done to evolve EB care! RSVP now and submit your questions 👉  https://lnkd.in/ghBwNmxa 📅 WHEN: Thursday, January 30 at 5PM 🧐 WHAT: A live Town Hall 🎥 WHERE: Virtually hosted by EBRP 😀 WHO: Kate Holler, mom to Rowan and passionate EB advocate, Dr. Jamie Feinstein of Children's Hospital Colorado, Dr. Ganna Bilousova of University of Colorado, and Michael Hund, CEO of EBRP 🦋 WHY: To educate all members of the EB and EBRP community on the exciting work we are doing and answer any questions

Friendly reminder from Katrina Parke, EBRP's Chief of Staff, to sign up today for our January Town Hall on Thursday, January 30th at 5PM EST! 🦋 This live virtual webinar will feature an amazing panel, including Kate Holler, mom to Rowan and passionate EB advocate, Dr. Jamie Feinstein of Children's Hospital Colorado, Dr. Ganna Bilousova of University of Colorado, and Michael Hund, CEO of EBRP! Join us for a collaborative discussion of bench to bedside care for EB patients with currently available tools and resources, as well as innovative work being done to evolve EB care! RSVP now and submit your questions 👉 https://lnkd.in/ghBwNmxa 📅 WHEN: Thursday, January 30 at 5PM ET 🧐 WHAT: A live Town Hall 🎥 WHERE: Virtually hosted by EBRP 😀 WHO: Kate Holler, mom to Rowan and passionate EB advocate, Dr. Jamie Feinstein of Children's Hospital Colorado, Dr. Ganna Bilousova of University of Colorado, and Michael Hund, CEO of EBRP 🦋 WHY: To educate all members of the EB and EBRP community on the exciting work we are doing and answer any questions