Editor’s note: With Ryan Getzlaf’s retirement from the Ducks, it seemed the right time for the Register to do another story about Getzlaf’s relationship with Hawken Miller and Orange County-based CureDuchenne, which Miller’s parents started following his diagnosis with Duchenne muscular dystrophy. The Register opted to have Miller, a journalist who once interned for us, write his story.
I first met Ryan Getzlaf a little over 11 years ago when I was 13.
At that point in my life I could walk easily, participate in light physical activities like pingpong and didn’t require much assistance to carry out a typical 13-year-old existence, filled with video games, school and hanging out with friends.
I looked normal then, but what many people at that time didn’t realize was I had a progressive muscle-wasting disease called Duchenne muscular dystrophy. So now, at 25, I use a power wheelchair nearly full-time, require assistance to get myself out of bed, in the shower and dressed.
In those 11 years, Getzlaf has hit numerous accomplishments on the ice. But none are as important as to me as working to find a cure for Duchenne muscular dystrophy.
His Getzlaf Golf Shootout has benefitted the organization my parents started, CureDuchenne, in that decade. That event has raised $4.26 million to find a way to end this horrible disease.
That first meeting was the beginning of my relationship with Getzlaf which has spanned many years and many changes in my life and his. Getzlaf has been fighting on the ice as I’ve been fighting an even more insidious foe that has slowly robbed my physical abilities.
As Getzlaf plays his final home game at Honda Center on Sunday before retiring, fans will easily recount all the memories on the ice. But what he’s done off the ice in Orange County, while a little less flashy, is no less impactful. It’s not only me he’s helped; there are thousands of others he has touched in some way.
The root cause of Getzlaf’s desire to aid others in the community relates to his position on Anaheim’s club. Being captain of an NHL team carries great responsibility, he said.
“I think it’s an obligation for us as athletes to try and help any way we can, especially when we have the platform that we do,” Getzlaf said in a conversation I had with him in the week leading up to his final game.
In 2008, he partnered with telecom company Telus to bring underprivileged children to a game for the Calgary Hitmen – his junior team – and receive a VIP experience. Since then, 20,000 children have gone through the program, aptly named Getzlaf’s Gamers.
Together with the Ducks and longtime former teammate Corey Perry, Getzlaf started the Learn to Play initiative, which has helped 9,500 children who couldn’t afford to play hockey skate for the first time.
The puck didn’t stop there. It went straight from the goal crease to the tee box.
Getzlaf’s golf tournament, the Getzlaf Golf Shootout, has become a well-known name among those who live in Orange County since its inception in 2011. The inaugural year benefitted an autism charity and, for the past 10 years, CureDuchenne.
One of his friends introduced Getzlaf to my parents, who started CureDuchenne after my diagnosis at 5 years old. Getzlaf said that he wanted to help a cause that affects nearly 15,000 boys in the U.S. but many people have never heard of or can let alone pronounce correctly.
“I heard the story of how it came to be, how your parents are, what they were doing, what they were starting and how much growth it needed,” he said. “It was a really good opportunity to help a group that we felt was putting in the work and putting in the passion for it.”
Having Getzlaf’s name behind us made a tangible difference in fundraising and has given patients and their families hope for the future.
There are currently four FDA-approved treatments for Duchenne muscular dystrophy that never existed when my parents got the heartbreaking news nearly 20 years ago. And more promising gene therapies that correct the genetic defect leading to the disease are in the drug development pipeline.
All the progress we’ve made at CureDuchenne would have been unfathomable when my parents set out on a journey to cure this disease. People like Getzlaf, Clay Matthews III and Scott Neidermeyer have helped us put this vital issue on the map.
“Through the years with meeting some of these families, meeting some of these kids, we’ve seen the great things that we’ve been able to accomplish so far,” Getzlaf said.
We have raised a lot of money together, but the memories I’ve shared with Getzlaf are priceless.
During my senior year of high school, we filmed a special for “Hockey Night in Canada.” The text piece that went along with it featured a photo of Getzlaf and I playing pingpong with a Fathead of post-sack celebration Matthews, the veteran NFL linebacker, in the background.
We also went head-to-head in the NHL video game. While Getzlaf may have two Olympic gold medals, played more than 1,000 career games in the league and won a Stanley Cup, I am confident that I can still beat him at his game in a virtual setting.
A few years earlier, I had the chance to interview Getzlaf for a CureDuchenne video. His oldest son, Ryder, now 11, was still a toddler. Gavin was an infant. Willa and Mac didn’t exist yet.
It was an incredible opportunity for a young journalist. I don’t remember most of the questions I asked, but the one that has stuck with me most is, “What would you want to do if you didn’t play hockey.”
Getzlaf came back with a surprisingly quick response.
“Dolphin trainer,” he said with his trademark brevity. I still joke with him about that. Sea World is just shy of a two-hour drive south of Anaheim, after all.
More than that, Getzlaf has seen me grow up from the outside looking in. I feel like I’m talking to my own father interviewing him again years later. He’s seen me give speeches at crowded events and be vulnerable about my own struggles.
“It’s sensitive, sometimes it’s hard,” Getzlaf said. “But all that stuff has been such a blessing for me moving forward and to see you grow into doing this it’s just incredible.”
As Getzlaf retires after a memorable 17-year hockey career, what he wants to be most remembered by is not on-ice stats but the relationships he’s made along the way.
“The memories that last are going to be the impact that we’ve had on the organization on the people around the rink, on my teammates, all that kind of stuff is the most important to me,” Getzlaf said. “Those are the things I’m going to remember going forward. And I hope that people remember that as well.”
Hawken Miller is a features writer for BioNews, a company that publishes websites on over 40 rare and chronic diseases. His freelance journalism has appeared in The Orange County Register, The Washington Post and Dot Esports.
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