Honoring Mats Steen: How a World of Warcraft Hero is Helping CureDuchenne Find a Cure for Duchenne Muscular Dystrophy 

By Debra Miller, Founder and CEO of CureDuchenne 

I’m honored to share two transformative events that embody both the resilience of the human spirit and the strength of our community: the release of The Remarkable Life of Ibelin on Netflix and our new partnership with Blizzard Entertainment’s World of Warcraft. Together, they not only celebrate the life of an inspiring young man but also forge a path toward a future where Duchenne muscular dystrophy is no longer a life-limiting condition.

A Life of Purpose and Community Through World of Warcraft

I first heard about Mats Steen, a Norwegian gamer who lived with Duchenne muscular dystrophy, and his family in 2019, when an article ran on BBC about Mats’ life and the impact he had through gaming. Robert and Trude Steen, Mats’ parents, had initially believed that his was a life lived in solitude. But after Mats passed, they discovered the breadth of his impact; people across Europe, whom he had met in World of Warcraft, reached out to the family to let them know just how much he had changed their lives. Despite the challenges of Duchenne, Mats found purpose, joy, and community through gaming in World of Warcraft, where he was known as Ibelin.

Our family—Paul, Hawken, and I—felt compelled to reach out. When we connected with Robert and Trude, they welcomed us with great hospitality in their hometown of Oslo, Norway, and we spent time learning about Mats, his courage, and the love he inspired. We left deeply moved by the life he had lived and the powerful legacy he left behind.

Trude Steen, film director Benjamin Ree, producer Ingvil Giske, Debra Miller, Paul Miller, and Hawken Miller

This hit very close to home for my family, as Hawken, who also has Duchenne muscular dystrophy, had just moved back home after college and an internship at The Washington Post. My husband Paul and I were concerned about the amount of time he was spending on video games during Covid. After meeting with the Steens, we became more aware of Hawken’s connections through gaming as we heard him laughing and conversing with his online friends. It had such a positive effect on him and our entire family, and Hawken was grateful that we could appreciate something so important to him.

A Story that Transcends Boundaries

Following the BBC article, Robert and Trude worked with award-winning director Benjamin Ree to bring Mats’ story to life on screen in the inspiring documentary The Remarkable Life of Ibelin. CureDuchenne was honored to be invited to its premiere at the Sundance Film Festival in early 2024. To stand beside the Steen family at this event and witness Mats’ story move audiences was incredibly emotional and humbling. We are also honored to be recognized in the film’s credits for our work to find a cure for Duchenne, a disease that defined Mats’ daily reality but could never define his spirit.

Laura Hameed, Emilie Perkins and Hawken Miller of CureDuchenne with Robert Steen, Trude Steen, and Benjamin Ree at the Ibelin premiere at the Sundance Film Festival. 

The film, now available on Netflix, speaks to all of us, reminding us that true connection, courage, and purpose can emerge in the most unexpected ways.

For us at CureDuchenne and for the Duchenne community, Mats’ story is especially personal and significant. Duchenne, a severe and life-limiting disease, often isolates individuals physically. However, Mats defied this isolation through the power of virtual connection. Through gaming, he created a world where his Duchenne didn’t define him and where he was a respected and beloved friend.

“I leave this world, and I spend most of my time in a distant world called Azeroth. In there, my chains are broken, and I can be whoever I want to be.” ~Mats Steen

A Partnership with Purpose

Inspired by the film, Blizzard Entertainment—the creators of World of Warcraft—decided to honor Mats’ legacy through their next Charity Pet program. In collaboration with CureDuchenne, they launched an in-game promotion, featuring an adorable fox pet named Reven, available through January 7, 2025. 100% of the purchase price* will be donated to CureDuchenne to accelerate our work toward a cure and improving care for families affected by Duchenne around the world.

This film and partnership with Blizzard Entertainment is a profound moment for our organization and for the Duchenne community. Blizzard was inspired not only by Mats’ story but also by the commitment CureDuchenne has shown over the years to make meaningful progress toward a cure for Duchenne. This campaign amplifies our reach and brings Duchenne to a global stage, engaging one of the world’s most loyal gaming communities to join our mission. We’re reaching players across the world, honoring their community and inviting them to be part of something bigger than the game—a real-life quest to cure Duchenne and help individuals like Mats and Hawken lead longer, healthier lives filled with possibility.

Amplifying Awareness and Inspiring Change

As I reflect on all that has led us here, from our first connection with the Steen family to witnessing Mats’ story inspire a movement, I am grateful. Grateful to the Steens for sharing Mats’ journey, to Blizzard for their generosity, and to everyone who has supported us along the way, and of course to Mats for the incredible mark he made on the world.

Together, we can honor Mats’ legacy and bring about a future where no parent will need to fear that their child’s life will be limited by Duchenne. We invite you to join us in this quest by sharing The Remarkable Life of Ibelin, adopting “Reven” in World of Warcraft, or simply learning more about our mission. Let’s make sure Mats’ legacy reaches far and wide.

Thank you for being part of this journey with us.

*Now through January 7, 2025, 10:00 AM PDT, Blizzard Entertainment will donate 100% of the purchase price of “The Reven Pack” digital bundle to CureDuchenne, less any chargebacks, refunds, transaction fees, and Value Added Taxes (VAT), or other similar taxes paid. These versions of items are special editions available as part of this initiative only. Buying or purchasing this digital item is a license.