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How an NFL Player’s Advocacy for Duchenne Is Touching the Lives of Children

Photos: Courtesy of CUREDUCHENNE

Matthews is a champion for boys with Duchenne muscular dystrophy.  Duchenne is a progressive muscle-wasting disease that primarily affects boys. By the time boys with Duchenne come of age, they can only watch in pain from the seat of a wheelchair as everyone around them moves flawlessly through life. As someone with this awful disease, I know what that feeling is like.

The story begins back in 2010 when CureDuchenne, a nonprofit started by my parents, had the opportunity to pick an NFL player to represent the Duchenne cause in a Cadillac promotion for the Super Bowl. I was 12 years old at the time, and Matthews was new to the NFL.

Since then, we have all grown so much — CureDuchenne, Matthews and I.  With Matthews’ help, CureDuchenne raised over $1 million with the Super Bowl promotion, which allowed the organization to invest in early scientific research, resulting in the first FDA-approved drug to treat the disease. Matthews became an NFL superstar, and I grew up and went to college.

The impact of advocacy

Matthews’ involvement in CureDuchenne benefits everyone affected by the disease. Whether he is tweeting about Duchenne, wearing CureDuchenne inspired cleats, giving interviews about his involvement in the cause or writing in “The Player’s Tribune” about his experience as an advocate, he is raising valuable awareness about the disease.

Personally, Matthews has had a big impact on my life and allowed me so many opportunities I wouldn’t have normally had. I will never forget New Year’s Day 2012 when I was able to get access to Lambeau Field, arguably the holiest place in the storied history of the NFL, to watch Matthews and his teammates warm up in the snow. For someone who has been a football fan since seeing the unbelievable 2006 Rose Bowl, where Vince Young put together a comeback drive to beat the Trojans, I was on cloud nine.

A hero on the field

To watch Matthews on the field and root him on for a cause that determines my future is an indescribable feeling. As someone who could never be part of a football team, seeing Matthews put on a spin move past an offensive lineman and speed towards a quarterback puts me right on the field, too, with grass between my cleats.

At one of CureDuchenne’s annual fundraising events, Matthews said, “Being part of a movement to help cure Duchenne is more of a legacy than winning a Super Bowl.” That was a night I will never forget.

When Matthews knew I wanted to go to the University of Southern California, he wrote a letter of recommendation for me, which I’m sure raised a few eyebrows in the USC admissions office. Needless to say, I am now in my fourth year at USC.

After filming a TV spot for a Proctor & Gamble Thanksgiving advertisement, I was able to sit with Matthews as he talked on camera about what Duchenne meant to him and why he supports the cause.

“The Duchenne cause has turned out to be something near and dear to me,” Matthews said in the video. “I first met Hawken a few years ago when he was a lively young boy who seemed like a normal 12-year-old. Within just a few years, Hawken lost the ability to stand or walk at length, and he had to get around with the help of a motorized scooter.  It was incredibly disheartening to watch how fast Duchenne took Hawken’s ability to run, jump and play away from him.”

Inspiring a generation

Matthew compassion for the cause has also made dreams come true for other boys with Duchenne. Last year, boys with Duchenne got to design Matthews’ cleats, which he wore on the field in front of millions of people. This small act helped educate people about Duchenne and drove donations to help find a cure.

ROLE MODEL: Matthews’ work in the fight against Duchenne has made an impact in the lives of the kids he’s touched. Not only is he a role model, but he’s literally making their dreams come true.

“It was cool, really cool. It makes me feel really happy to know Clay has our backs,” says Braedan Heneger, Duchenne patient and designer of one of Matthews’ cleats in the “My Cause, My Cleats” promotion.

“Clay, thank you for all the work you have done to support Duchenne. Keep doing what you are doing!” says Devin Argall, cleat designer and one of many Duchenne boys who are part of the ever-growing Clay Matthews and Packers fan base. “The war against Duchenne isn’t for one person and won’t be won by one person. But Clay is going out and recruiting people to help us win one battle at a time to cure Duchenne.”

Matthews has a hugely successful career, and there are so many causes he could support. But he chose Duchenne because he believes in the cause and wants to see all us walk — and maybe even play football someday.

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