I developed generalized paroxysmal dystonia as a teen. Shortly after my diagnosis at 28, I made a video about my life with dystonia for the 2011 Neuro Film Festival. For the first time, I spoke openly about my symptoms & the response was heartwarming. In 2012 & '13 I participated in the Dogs 4 Dystonia Virtual Walk to raise money for dystonia research. This Summer I became involved with the campaign to have Sept officially recognized as dystonia awareness month. I launched the FB page Make September Dystonia Awareness Month, the website dystoniaaware.org and other related social media sites to coordinate info about the petition. This month has been the most tiresome but rewarding of my life!
I’m a Patient Leader