Rare Storytellers

The Mellowes Center, in collaboration with Harmony 4 Hope, invites you to Rare Storytellers on Thursday, November 14th, from 11:45 a.m. to 1:15 p.m. in Kerrigan Auditorium at the Medical College of Wisconsin (MCW). This unique event brings together patients, healthcare professionals, scientists, and musical artists to highlight the challenges faced by those living with rare diseases while fostering hope and unity. This special event will feature Alexis Feucht, who will share her personal and powerful journey being diagnosed with stage 4 glioblastoma. Her story of resilience and courage will be complemented by expert insights from Dr. Ryuma Tanaka, Assistant Professor of Pediatric Hematology/Oncology/BMT at Nationwide Children’s Hospital. Dr. Tanaka brings his medical expertise to the conversation, offering a scientific perspective on rare disease treatment and care. The event will also feature Katherine Nagy, a talented songwriter and performer, as our musical ambassador. Katherine’s music will help set the tone for the event, offering an uplifting and emotional performance that connects storytelling with song. This dynamic fusion of science, patient experience, and music makes Rare Storytellers an unforgettable experience for all attendees. Our special guest moderator Steve Scaffidi, a radio host for 620WTMJ, will guide us through these inspiring stories with a sit-down Q&A giving the audience an even deeper view of rare disease. Rare Storytellers has been creating a platform for rare disease patients and advocates to share their experiences, while also educating the next generation of healthcare professionals and researchers. This event promises to leave a lasting impression, raising awareness about the importance of rare disease research and advocacy. Free lunch will be provided for those who register in advance. We strongly encourage you to attend and be a part of this event that empowers patients, connects our community, and inspires new perspectives in healthcare. Don’t miss this opportunity to hear these incredible stories, register today!