I am a 45 year old father of three. I have had Parkinson’s for over a decade and probably started seeing symptoms five or six years before that. Even after being diagnosed, I tried my best to stay in the closet. This was done more out of necessity than vanity. You see, I was, I am an actor.
I made my living as an actor for 16 years, and eight years after diagnosis. As I do not enjoy the same level of fame and celebrity as Michael J. Fox, I feared that once I was “out” my opportunities to work would be severely hindered. So, for the first few years I did very little to promote awareness and even less in terms of advocacy.
My wife, Charlene did a lot of research and we donated to various organizations, but we never went to anything or actively participated in any way. When we first heard of the Unity Walk, we loved the concept. One day, one event, to support all the major Parkinson’s foundations. Once at the Walk, we had a wonderful day. It was the first time I felt like I wasn’t alone in my battle. I wanted to do more. I wanted to participate in a meaningful way.
At the Walk we met representatives from many notable Parkinson’s organizations. All of them do important work. All have noble missions. Awareness. Patient support. Research. But one stood out, to me. They had a unique charter: Advocacy.
PAN’s primary mission since its founding in 1991 has been to provide an informed, organized, and effective voice in public policy issues affecting the search for a cure for Parkinson’s disease. Basically, what this means, is that PAN lobbies on behalf of the Parkinson’s disease community.
PAN allows patients, caregivers, doctors, researchers and others to become advocates. Advocates then descend on Capitol Hill and meet with members of Congress and Senators to secure funding, affect change, and put a face on this insidious disease.
It is quite humbling sitting with a United States Senator and telling them your personal story. There is also an incredible feeling of purpose, power and pride as well. I feel like I am doing something that I would not otherwise have an opportunity to do: speak face to face with the people who truly are decision makers. I know that what we do with PAN is important, tangible and real. And I know we are making a difference.
Today, I serve as an Assistant State Director of New Jersey for PAN. There are monthly tasks for all of the grassroots leaders to accomplish – from contacting our legislators with asks for specific budgetary and policy issues that affect the Parkinson’s community, to attending support groups to help keep them aware of PAN’s advocacy efforts, to staying involved in social media, and keeping up to date on the issues that are important to all of us.
I am proud and honored to be a small part of PAN. To get involved visit www.parkinsonsaction.org.