On a crisp January evening in Park City, Utah, Hawken Miller, a content marketing specialist for wheelchair-maker Permobil, stood in line with CureDuchenne leaders Emilie Perkins and Laura Hameed. They were waiting to watch “The Remarkable Life of Ibelin,” a Norwegian documentary making its 2024 Sundance Film Festival debut.
The film tells the story of Mats Steen, a young Norwegian man born with Duchenne muscular dystrophy, a genetic disorder causing progressive muscle weakness. Steen, increasingly unable to participate in everyday activities, found solace in playing video games, especially World of Warcraft, an online game where players assume the roles of heroic fantasy characters.
For Perkins and Hameed, the film resonated with their mission to transform lives through CureDuchenne, Orange County’s 69th largest nonprofit organization (see list, page 18).
For Miller, the story struck a deeply personal chord. Like Steen, he is a gamer living with Duchenne muscular dystrophy, a condition that typically requires boys to use wheelchairs by age 12.
As they waited, they struck up a conversation with the group behind them. As it turns out, they discovered they were standing next to Holly Longdale, executive producer of World of Warcraft, and her team.
What began as a chance encounter quickly turned into a serendipitous meeting that would evolve into a transformative partnership.
Paths Converge
Debra Miller, founder and CEO of CureDuchenne—and Hawken Miller’s mother—first encountered “The Remarkable Life of Ibelin” well before its premiere. She learned of Steen’s story through a BBC article and connected with his parents, Trude and Robert Steen, via a CureDuchenne board member.
During a family trip to Europe, Miller made a detour to meet the Steens.
“We met Robert and Trude and had the pleasure of viewing an early rough draft of ‘Ibelin,’” Debra Miller told the Business Journal. “We developed relationships with this incredible family—they’re so inspirational, and we learned so much from them.”
Blizzard Entertainment, the Irvine-based company behind World of Warcraft, was not initially involved in the documentary. After the film was finished, Director Benjamin Ree invited Blizzard executives to a private screening.
Longdale attended the event and was deeply moved by Steen’s story. He passed away 10 years ago at age 25.
“I met Robert [Steen] and, like most people, fell in love with him—just his passion,” Longdale said. “I remember going up to him and hugging him and crying.”
Determined to honor Mats Steen’s legacy, Longdale’s team created a tribute for him in World of Warcraft. They provided assets for the film and designed an in-game memorial: a gravestone on Crystal Lake’s islet in Elwynn Forest with the inscription, “deeply missed, never forgotten.”
Serendipity Leads to Partnership
CureDuchenne and Blizzard Entertainment began planning a collaboration soon after the documentary’s premiere.
“It felt like this meeting had the potential to make a real impact, especially if we could come up with something meaningful together,” said Perkins, senior director of communications for CureDuchenne.
On Oct. 25, the same day the documentary premiered on Netflix, they launched their first joint venture. Blizzard designed an in-game pet inspired by Steen: a fox named Reven, his favorite animal.
Reven wears a detective hat — a nod to the in-game detective agency Steen created. The release also included a special backpack featuring a sleeping fox.
“When anyone purchases the Reven pack in our in-game store, all the proceeds go directly to CureDuchenne,” Longdale said.
Beyond virtual items, World of Warcraft incorporated in-game advertising for CureDuchenne, and players began visiting Steen’s memorial. Influencers streamed these events, and players with Duchenne shared their stories.
“There have also been players who’ve written to us who have Duchenne,” Longdale said.
“Even though we are in a video game, there are moments when you realize this is more than just a game. To be able to help CureDuchenne is a real honor.”
Funding for a Cure
The partnership runs through Jan. 7, with all funds supporting CureDuchenne’s mission to improve lives affected by Duchenne. The nonprofit focuses on accelerating research, improving care and empowering the Duchenne community.
“As the leading funder of patient research, we’ve made significant strides in Duchenne muscular dystrophy,” Debra Miller said. “After 20 years of research, we now know how to cure the disease—it’s about delivering the right therapies to the right muscles.”
She praised Blizzard’s commitment.
“You can see the team is all in, and they really care,” she said. “Blizzard, with the resources they have, and especially how perfectly tied in this promotion is to our community, are really making an impact.”
As for her son, Hawken, he told the Business Journal that despite never meeting Mats Steen in the virtual world, he still feels deeply connected to him.
He called the Blizzard-CureDuchenne partnership a dream come true.
“The more people know about Duchenne, and how it impacts boys and young men, the more they can spread awareness and donate to help move research forward,” Miller said.
