He’s been featured on the National Geographic Channel. He’s shaken hands with President Obama. He’s been stopped by the secret service.
Even after all of that, Jason Dunn keeps going, and he’s taking his dystonia with him.
Diagnosed at the age of six, Dunn (now in his late 30s) has lived with generalized dystonia for most of his life. Some years have been better than others, and certainly the same can be said of his litany of treatment courses. Surgery, deep brain stimulation… you name it and Dunn has probably done it.
Now, his dystonia has progressed to the point that he needs a lightwriter communication device to speak, having lost control of his vocal chords. While his struggles can make him feel like dystonia has won at times, Dunn doesn’t seclude himself or fall into self-pity.
Instead, he uses that lightwriter to speak up for himself and for everyone with dystonia.
He appeared in a National Geographic feature called Extraordinary Humans: Muscles, giving insight into his life and the intricacies of his condition
That video now has over four million views on YouTube.
Since filming that over four years ago, Dunn has become a visible and prominent advocate for dystonia. Along with his agent and friend Mike Delise, Dunn makes appearances on TV and in print; in-between sharing his love of video games and his attempts at real-life driving on his own YouTube channel.
He has also traveled to Washington, DC to get dystonia the recognition it needs.
Of course, he occasionally has setbacks. His August 2015 petition to make September officially recognized as Dystonia Awareness Month closed without enough signatures. But Delise speculates that maybe, if the secret service hadn’t stopped Dunn from handing Obama a flier during a face-to-face meet-up, Obama himself would’ve recognized the petition’s importance.
And it’s so true when it comes to dystonia: even multiple steps backward can end in at least one step forward. Dunn has been awarded the Dystonia Medical Research Foundation’s Dystonia Awareness Star Award for his tireless efforts for the community.