#194. Why Eddie & Jill Vedder Care About This Rare Disease

Episode #194: In this episode, Kimberly Lovi interviews Stephanie Luciano Novo about Epidermolysis Bullosa (EB), a rare genetic skin disease. They discuss the impact of EB on children and families, Stephanie's personal connection to the cause, and the community's efforts to raise awareness and funds for research. The conversation highlights the advancements in treatments and the importance of community involvement in fundraising events like the plunge. The episode emphasizes the urgency of finding a cure and the inspiring resilience of those affected by EB. Chapters 00:00 Introduction to Epidermolysis Bullosa (EB) 06:06 Personal Connection to EB and Community Involvement 12:08 Understanding the Impact of EB on Families 18:03 The Role of Fundraising and Community Events 23:57 Advancements in EB Research and Treatments 29:54 Call to Action and Community Engagement Follow Kimberly on Instagram and TikTok @kimberlylovi or @iconicnationmedia  EBRB (EB Research Partnership) https://www.instagram.com/ebresearch/     Matter of Time Film https://www.instagram.com/matteroftimefilm/   Matt Finlin - Director of Matter of Time https://www.instagram.com/mattfinlin/   Eddie Vedder, Pearl Jam frontman, is a co-founder of EBRP  https://www.instagram.com/eddievedder/   Jill Vedder - ChairWoman at the EB Research Partnership https://www.instagram.com/jill.vedder/   The official Plunge For Eoldie - Plunge for EB account https://www.instagram.com/plungeforelodie/