What better way to celebrate a new year than with one of the largest awareness campaigns in the history of Duchenne muscular dystrophy! If you haven’t heard by now, Clay Matthews (the MVP of this community!) and the Green Bay Packers are going to the Super Bowl! Clay is the NFL star that recorded a public service announcement (PSA) sponsored in part by our friends at Cure Duchenne and Cadillac. Because of Cadillac’s generosity and devotion to raising awareness on behalf of our sons, this PSA got a tremendous amount of air time over the last few weeks and brought Duchenne to the consciousness of people around the country who might not have ever heard of the disorder. Because of the persistence of Debra Miller and Mindy Cameron, the PSA and accompanying auction, have made the world listen.
In fact, in the last two months alone, Duchenne has been “said out loud” in major ways, through major media outlets. The New Yorker magazine; WebMD magazine feature; pickups in Google alerts regarding research, care, and advocacy; and of course, the PSA have given us all a forum to share our stories and make our voices heard. Whenever one of our stories is told – in a local newspaper for an upcoming Run For Our Sons or Coach To Cure MD event, to a representative in Congress at our Advocacy Conference, in a simple status update on Facebook – we are making progress in our fight to end ignorance, our fight to end Duchenne.
When I started Parent Project Muscular Dystrophy almost 17 years ago, the quiet in the world of Duchenne was deafening. Muscular dystrophy was barely uttered, much less the word Duchenne. Today, we have the passion and dedication of multiple Duchenne-specific foundations, support from the NIH and CDC, top researchers and scientist devoting their professional life to developing treatments, and most importantly…you. No matter how you tell your story, no matter how you share your voice, you are using your voice on behalf of not just your son, but all of our sons.
Who would have thought, too, that the world of football would be so welcoming to this community? Whether it’s high schools and colleges around the country participating in Coach To Cure MD each September or an NFL all-star using his voice and celebrity to share our urgent message, football – a sport our sons can only dream of playing – is embracing our mission and our race against the clock.
In two weeks, on Super Bowl Sunday, this community we will be watching the big game like the rest of the world. But this year’s Super Bowl and the games leading up to it have are special, and represent an extraordinary time in the history of Duchenne. So much work has been put into making the most out of Cadillac’s and Clay Matthew’s generosity by so many people in this community. Let’s take a moment to celebrate the victory of this win for this whole community. For all of our sons.
So get in those final bids for Super Bowl tickets and enjoy the game…
Together, we will end Duchenne. And we will do it as One Voice.
And, at the risk of showing favoritism, Go PACK!