I am a 34-year-old, former white collar litigator who had to put her career on hold after being diagnosed with dystonia, a neurological movement disorder. The awkward, fatiguing postures and painful spasms associated with this chronic illness made it impossible to not only work, but also to continue with my day-to-day lifestyle. As a newly married young woman, I was stopped in my tracks by a debilitating physical disease with no known cure and very little information about it out there. In fact, I had never heard of dystonia until I was diagnosed with it. This wasn't okay, and I quickly decided that I would use my skills as an attorney and student of public policy to advocate for dystonia awareness and research funding. To that end I tweeted about my activities, wrote countless Facebook postings, documented on Instagram, organized fundraisers, and formed a team to run the NYC Marathon on my behalf. I helped create Dystonia Advocacy Day's online counterpart, a successful effort to bring attention to this disease via Facebook and Twitter. My work and the campaign itself were the subject of a Huffington Post piece. (Dystonia Advocacy Day was made official and publicized by New York City's former-Mayor Michael Bloomberg.) Through my tweeting I have reached out to luminaries with huge followings such as Russell Simmons and Daryl McDaniels of Run DMC, who have retweeted many of my tweets. More recently, and maybe most importantly, I wrote an Op-Ed that was featured in the Sunday Review section of the New York Times. Entitled "Disease and the Public Eye," its dual goal was to shine a spotlight on the importance of disease awareness for lesser known illnesses like dystonia ("Awareness generates funding, and funding generates research, which can lead to enormous life-changing differences for people who struggle with illnesses you probably haven’t heard of. I couldn’t ask for a more dedicated, intelligent, empathetic group of doctors and scientists working on a cure for dystonia, but I can ask for more of them, more work and more research, which depends on more funding."), and to explore why certain diseases become part of the public lexicon, while others do not. I know that this is something that will resonate with so many other health activists as well as those living with diseases that nobody's talking about. The Op-Ed sparked lots of online discussion, especially on Twitter and Facebook; a Google search of the title turns up 3.8 million results. To date, through all these efforts, I believe I have helped increased awareness for what is the third most common, but too-little-heard-of movement disorder and have raised more than a quarter of a million dollars toward research. I was recently profiled in the New York Law Journal about my move from being one form of advocate - an attorney - to another - a voice for the estimated 500,000 kids and adults living with dystonia. I currently serve as Chair of The Bachmann-Strauss Dystonia & Parkinson Foundation's Young Leadership Council and as the youngest member ever of the Foundation's Board of Directors. I am strongly considering starting a blog in 2014.
I’m a Patient Leader