Debra and Hawken Miller of CureDuchenne Spoke With Me About The Condition, The Reven Pack in ‘World of Warcraft,’ And How It Helped Raise Awareness (Interview)

The Remarkable Life of Ibelin is a documentary that fundamentally changed my outlook on life. It’s a beautiful story, and one that deserves to be echoed for all eternity. The story and tribute to Mats Steen, a young man who suffered from Duchenne Muscular Dystrophy, helped many people, game players and not, learn that there is a world that is accepting of everyone. And that this world exists within the walls of our favorite electronics. I had the opportunity to speak with Debra and Hawken Miller of CureDuchenne.

I learned about the success of the Reven Pack collaboration with World of Warcraft. But most importantly, I learned more about Duchenne, and how it has impacted their lives.

Could you tell me a bit about CureDuchenne and what inspired you to start the organization? 

So, Duchenne Muscular Dystrophy is a progressive muscle disease, usually diagnosed by 5 years old. Historically, it’s primarily boys that are affected because it’s an X-linked Chromosome. Historically, boys would lose the ability to walk between 10 to 12 years old, and back when Hawken was diagnosed 22 years ago, the life expectancy was about 18. And so fast-forward now, Hawken’s 28 years old and doing very well.

The life expectancy over the past two decades has increased significantly, and the inspiration was Hawken! Both my husband and I were in business, sales and marketing positions, and Hawken was diagnosed in November of 2002. And we immediately went into action. We were just really surprised that people weren’t aware of this disease. And so little was being done. So we started CureDuchenne to really take the early stage academic science that was in the labs and academic institutions and move it into clinical trials.

So we provide early funding to research projects to get the proof of concept, so they can get the funding to actually move into clinical trials.

When it came to the collaboration between ‘World of Warcraft’ and CureDuchenne, did you approach them, or did they approach you with the idea to work together?

Debra: So, it’s interesting. We met the Steen Family, Hawken, when was that?

Hawken: In 2022.

Debra: 2022. We had heard about them and we were in Europe, so we kind of did a detour and went to Oslo to meet with the family. And we had the privilege of seeing a rough cut, they’d already been working on the movie at that point. Then, we came back and we knew that there might be some involvement with World of Warcraft, with Blizzard. And so we, internally, were strategizing on how to approach them and figure out a good way to collaborate. During the Sundance Film Festival in 20….

Hawken: January 2024

Debra: 2024, Hawken went with Emily, our communications director, to the film festival, and just so happened to be standing in line next to the whole Blizzard crew. And Hawken, I’ll let you take it from there.

Hawken: I think Emily kind of initially made the connection, and I was able to meet Holly Longdale, another Blizzard executive, and briefly introduce myself. We didn’t talk for very long, but I think that was kind of a seed that we planted there with them. And then the CureDuchenne team did a great job of following up and kind of continuing the conversation from there.

Working with Blizzard Sounds Like A Joy, Honestly

Debra: And it was a lot of education on our part, with Blizzard, to help them learn about Duchenne, just like we had to learn. And don’t feel bad about not knowing about it, because before Hawken was diagnosed, we had never heard the word before. And so it took a long time, basically, and there was a lot of logistics involved between the Steen family and “Ibelin” and Blizzard and Netflix, and our Organization.

Blizzard has done promotions like this before, and we were really proud that it turned out really well. I don’t want to compare to other promotions that they’ve done with other charities. But, I know that we did really well. Kudos to our team and Hawken for the job they did with Blizzard and Hawken helping to educate us.

It was a little of the Blind leading the Blind, where you had 3 or 4 women internally at CureDuchenne working with Blizzard who knew nothing about video games. So, Hawken, which is one of your later questions, I know, we relied very heavily on Hawken to try and keep us from embarrassing ourselves.

Without being forward, I assume that you were aware of Mats Steen and ‘The Remarkable Life of Ibelin’ before its debut. How much of an impact did Mats’ story have on CureDuchenne and this collaboration?

Hawken: I have to give so much credit to Mats for kicking this off from his house, across from his parents. Playing this game and just being willing to share himself with other people through text, through the environment, and as you see in the movie, he helped a lot of people through a lot of things. First it’s Mats, and then obviously, Mats’ parents, Robert and Trude, and the amount of vulnerability that they had to put this documentary out.

Having to relive all of those memories, but knowing that there was a greater purpose behind it, I think, they deserve so much credit.

Debra: And they really had a mission, obviously raising awareness for Duchenne. But also, raising awareness for how video games provide community. That was a real passion of theirs. And they were obviously very passionate about Duchenne and working with the CureDuchenne org. They really felt that Mats had a gift that they were unaware of. And the community that he was living with, I think it gave them so much joy to know that he had that community. That they really want to make sure and spread that.

‘World of Warcraft’ Helps Bring Community and Players Together

In fact, it was interesting, because Hawken was at USC and then he actually had an internship at the Washington Post after College, and he came back in October 2019. He was living with us just for a short time while I went to get a job, and BOOM! COVID hit, and he was stuck with us for over 2 years. Of course, I was the mom that was giving a hard time, like, “you’re playing video games too much”, and this and that. And then after we came back from Oslo and met the Steen family, one night my husband Paul and I were watching TV. The room backed up to Hawken’s room and I couldn’t hear what he was saying.

But he was online playing games with his community, laughing, trash talking, and having a great time. And I thought “Hmmm. Okay. I… I get it now”, and he does have friends, and it’s a community. It made his life a lot easier by not having his mom nagging so much.

Hawken: It was an “I told you so” moment in the highest degree!

How has ‘The Remarkable Life of Ibelin’ and ‘World of Warcraft’ affected CureDuchenne since its release? It seems that it helped bring many new eyes to the organization, myself included. 

Hawken: I think for me, first off, the amount of people that know about Duchenne, where I can just say the name and there doesn’t have to be a whole explanation behind it every time. People just get it. I think they did a good job of explaining what the disease does to someone, and what it robs them of. And so, there’s that, and I was visiting a Church in LA. There were these two people from Norway that were there. And they knew about the documentary and about Mats, so just to see the international aspect and the social media.

So many people saying how good it was, and that we’re behind you and supportive of you. It really goes to show that, you know, all those people in the woodwork were willing to support this, they just didn’t know what to support. And now they do, so that’s huge.

‘The Remarkable Life of Ibelin’ Continues To Help People Learn

Debra: You know, this is a rare disease. There are only, maybe 10 to 12,000 patients in the US. That sounds like a lot, but when you compare, for example, Type 1 Diabetes, Childhood Diabetes. That’s 1.3 million. So, we’re like 1% of that population, so it’s a tiny population. Most people will never be touched by it. The Duchenne community is too small to support the research and resources that we need.

The federal government provides a very small amount of funding. Therefore, we have to rely on people that will never be touched by Duchenne to help us. And we do that in a lot of different ways. But the fact that this movie brought so much awareness to Duchenne. On top of that, Blizzard added to that with gamers all over the world that didn’t know about Duchenne and contributed funding to this. It’s phenomenal. It’s what very few rare diseases have an opportunity to do.

Another way we reach the general public is through Wine Events. We’ve been fortunate enough to partner with Napa Valley Wineries and they host events for us around the country. So we just have to be creative, we can’t rely on the Duchenne community to support the research and resources that we need.

With the Reven Pack bringing in $2 million to CureDuchenne, are there any additional plans to work with ‘World of Warcraft’ or other games in the future? 

Debra: So, they say YES! We have been enjoying interviews with Holly, who’s the Executive Producer, and people have asked… It was kind of funny the first time. Somebody asked that very same question, and I’m like “Of course, we want to, but Holly, it’s up to you now!” and she said “Sure, we’d love to continue!”, so I think that they’re in our backyard here. And they’re just wonderful, wonderful, wonderful people. I mean, Holly is such an incredible person.

So smart and so accessible, compassionate, and just a really fun person that I do believe that we’ll have further collaborations.

Blizzard Went Above and Beyond To Help

Hawken: I am really thankful for Blizzard for picking us out of everyone that they could have picked. I feel really blessed about that. Regarding Holly, I know the World of Warcraft community really loves having her as the executive producer. She’s really open to listening to people and I think she treats everyone the same. She’s the same public face in private, from my experience, and I really appreciate her and the whole Blizzard team.

Debra: This was one of those situations where it was a “Win, Win, Win”. Holly acknowledges this also, and her team. Everything just fell into place. It was kind of weird and meant to be. Having the Steens and “Ibelin” and Blizzard and World of Warcraft and CureDuchenne all coming together. It was one of those magical partnerships. Very similar to what we did with General Motors/Cadillac, Clay Matthews and CureDuchenne way back in 2011. You just couldn’t go out and design that.

You couldn’t say, “I want to put together a strategy to raise 2 million dollars”. It just happened. It was meant to be. Blizzard had been such a good partner and the Steens, Trude and Robert, are such incredible people. In fact, they’re going to be the keynote speakers at our FUTURES Family Conference in May (2025) in San Antonio.

As we are a site that primarily covers video games, Hawken, would you mind telling me what kind of games you’re a fan of?

Hawken: I’m kind of a purist when it comes to gaming. I kind of go and play one game for like seven years until I get bored of it. I started with, the first game I played that was more of a shooter game, was Star Wars: Battlefront II on the PlayStation 2. That one was really fun. Then I got into Call of Duty: Modern Warfare II, around the same time, Halo: Reach came out. I played a lot of Halo: Reach, a lot of Firefight with friends.

Then I got into League of Legends with some of my high school friends and played that game for a very long time. From like 2011 to 2019, basically. And then Warzone came out during COVID. Initially, I was like “What is this Warzone? Like, Call of Duty’s just multiplayer, why are we making this Fortnite?“. Then, I played it and thought that it was pretty amazing. So I’ve been really into Warzone for the past five years.

Every now and then, I’ll dabble in things like God of War, FIFA, Madden, and Mario Kart is always like a favorite of mine.

Debra: I’m committed, I’m so intrigued by World of Warcraft now, and just the whole world that I hear all these people living in. So I’m committed that as soon as I am semi-retired, I’m going to start playing it.

Outside of the collaboration with ‘World of Warcraft’, are there any notable achievements that CureDuchenne has accomplished that you’d like to speak about? 

Debra: A whole bunch! We’ve gotten some of our early funding projects that have turned into approved drugs. Which is a step in the right direction, but not a cure yet. Many of our early funding projects are going into Phase 3 Trails, so we expect them to be approved. We have been extremely successful in funding early science that has kind of filled the research pipeline. And many of these projects are now moving forward through Phase 1, Phase 2, Phase 3, and Approvals.

Really proud that we have, literally, moved the needle on Duchenne research and outcomes for patients. And also have really brought the families together with our resources and especially our big national conference in San Antonio.

Is there anything you’d like to tell our readers about Duchenne that may help them learn more about the disease? The floor is yours to speak about it. 

Hawken: To your point, I think just because we use a wheelchair doesn’t mean we’re mentally impaired. Obviously, some people have issues with communication, but my perspective is that you should always try to communicate with that person in the wheelchair first before moving onto a caregiver or parent or someone else. Because they’re often overlooked so much, and even if they’re non-verbal, and they can’t explain how much to them that you’ve addressed them directly, it really does mean a lot to them. That’s one thing I would say.

In terms of Duchenne, I think another thing that people get confused about… some guys can still walk, but they use wheelchairs and other mobility equipment. That’s just to help preserve their muscles so they’re not straining and overdoing it with walking, which is something that they can conserve with a mobility device. They can hold onto that mobility for longer. I think that just in general, you never know what someone’s situation is. What’s going on inside of them.

Kindness Helps The World Go Round

I think we can never assume what someone can or cannot do. Just assume that they can do as much as you or anyone else.

Debra: Just, you know, for the reasons we’ve already stated. We really need people to help us. People who not only care about childhood diseases, but who want to contribute to an organization that’s actually focused on getting results. And actually changing the course of the disease, and we have a track record to show that we’re actually doing that.

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I would like to take a moment to thank Debra and Hawken Miller of CureDuchenne for taking the time to speak with me about their organization. If you’d like to learn more about Duchenne or the CureDuchenne organization, you can follow this link to discover more.