MEDIA ADVISORY
EVENT: The UC Irvine Muscle Biology and Disease Research Center and CureDuchenne will host a free community screening of the award-winning documentary “The Remarkable Life of Ibelin” during Muscular Dystrophy Awareness Month. The event will bring together scientists, clinicians, patients, families and community members to raise awareness of Duchenne muscular dystrophy and highlight advances in muscle disease research, clinical trials and care.
The documentary tells the story of Mats Steen, a young man with Duchenne muscular dystrophy whose family discovered after his death at age 25 that he had built a vibrant community and deep friendships through the online game “World of Warcraft.” It explores disability, connection and the impact of online communities.
WHEN/WHERE: Friday, Sept. 18, at the Rivian South Coast Theater in Laguna Beach. Doors open at 6:15 p.m., and the film begins at 7 p.m.
INFORMATION: The event is free and open to the public, including UC Irvine affiliates. Register at events.rivian.com/
HIGHLIGHTS:
6:15 p.m. Doors open. Attendees can meet UC Irvine muscle scientists and physicians and visit educational exhibits, research demonstrations and resource tables hosted by UC Irvine and CureDuchenne. Select items will be available for purchase throughout the evening, with proceeds benefiting the event. Researchers and clinicians will share information about current clinical trials and advances in muscle biology and neuromuscular disease.
7 p.m. Screening of “The Remarkable Life of Ibelin”
After the film: Panel discussion and audience Q&A featuring researchers, clinicians and patient advocates
BACKGROUND: Duchenne muscular dystrophy is a progressive neuromuscular disease. The Sept. 18 event is intended to connect the experiences of patients and families with the scientists, clinicians and advocates working to advance research, treatments and care for Duchenne and other muscle diseases.
“The Remarkable Life of Ibelin” premiered in 2024 at the Sundance Film Festival, where it won two awards in the World Cinema Documentary Competition – the Audience Award and the Directing Award. It also won a Peabody Award.
Muscular dystrophy and other muscle-wasting diseases represent a significant clinical research portfolio within the UCI School of Medicine. The UC Irvine Medical Center currently has eight active clinical trials for muscular dystrophies, including gene therapy studies and those evaluating the safety and efficacy of emerging treatments.
Established in 2023, the UC Irvine Muscle Biology and Disease Research Center promotes research, clinical translation and education in skeletal muscle biology. Directed by Armando Villalta, Ph.D., the interdisciplinary center brings together about 80 scientists, clinicians and trainees from across UC Irvine to accelerate discoveries in muscle regeneration and neuromuscular disease. It’s expanding education and workforce development through graduate courses, collaborative research initiatives and a National Institutes of Health-supported T32 training program for future muscle biologists and physician-scientists.
CureDuchenne, headquartered in Newport Beach, is a global nonprofit dedicated to improving and extending the lives of people with Duchenne muscular dystrophy. For more than two decades, the organization has invested in early-stage research to help advance potential therapies into human clinical trials while expanding access to expert care, education and resources for families.
The event is supported by a UC Irvine Campus-Community Collaboration Incubator award.
