Periodically PAN highlights one of our tireless volunteer advocates. PAN thanks all our advocates for your commitment and contributions to the Parkinson’s community. This week we are highlighting Bruce McEvoy, Florida Assistant State Director.
PAN: What drew you to Parkinson’s advocacy and working with PAN?
BM: I was impressed with the professionalism of the staff and I could leverage some of my career experiences with advocacy work. In 2011, about a year after being diagnosed with Parkinson’s disease, I learned about PAN and on a trip to Washington, D.C. I made a cold call at their headquarters and asked if I could see someone about advocacy work. I was briefed by a number of staff members and then Amy Comstock Rick, CEO of PAN, joined for some final Q&A. It was very clear that we had a good match.
PAN: How do you educate people about Parkinson’s disease?
BM: First, you need to let people know that you have Parkinson’s and be willing to talk about it with family, friends, business colleagues, and so forth. I wrote a paper on my early experience with Parkinson’s for a friend recently diagnosed and now I use the briefing paper with other similar circumstances. I’m also willing to do one-on-one sessions, if that helps. In my first meeting with Congressman Bill Posey (R-FL) on Capitol Hill, which was not a PAN meeting, I told him that I had Parkinson’s and he responded by telling me and others attending that his father had passed away with Parkinson’s.
PAN: What’s been most effective in terms of educating people about Parkinson’s?
BM: Awareness programs. I’m on the Board of the Alzheimer/Parkinson’s Association of Indian River County and we have collaborated with the University of Florida Movement Disorder Center in bringing speakers to our awareness sessions. We also have a very active public relations program.
You can’t assume people are aware of the disease, so you should remember to explain Parkinson’s before you start talking about action alerts and contacting Members of Congress. It sometimes takes many one-on-one meetings and you have to keep hammering away about why it’s important to get involved.
PAN: What are some of the biggest challenges you have faced as an advocate?
BM: The competition in terms of other diseases and trying to break through the clutter, and I don’t mean this in an unkind way. There is no cure for Parkinson’s or ways to slow the progression. I would also add that the gridlock of government makes it difficult to maintain contact as the House and Senate are consumed with politics.
PAN: What has felt like “success” during your time as an advocate?
BM: When Congressman Posey and his staff visited one of our voice therapy classes during the August recess and then joined a few board members for a relaxed discussion of issues. That’s when he learned that our association had no government funding, and we did not want it. He responded that he would be pleased to write letters on our behalf to private foundations.
PAN: Do you reach out to your Congressmen by phone, or has e-mail been more effective?
BM: My approach on a critical issue is to first contact the chief of staff by email to give him or her head’s up on the issue and then make the call. In general, our Members of Congress want us to develop a close working relationship with staff.
PAN: What advice do you have for people with Parkinson’s who want to become more involved with PAN?
BM: I first try to get them linked up with PAN so they can better understand the issues and follow them in PAN’s weekly reports. When they start to feel comfortable with the issues I try to encourage them to participate in action alerts, and here they may need some assistance from our state directors. Once they see how the process works, it is time to consider training such as the PAN Forum. We also need to recognize that some people have no experience working in Washington, DC and this does require training and you can’t rush them. Once they get started, most people can’t believe how easy it is. Members of Congress are just like you and me. They aren’t any different. Their staff members are usually fantastic young people to work with. They want to help.
To contact Bruce or other PAN advocates, visit PAN in Your State.