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 Michelle Lane, Louisiana State Director.
PAN: What drew you to Parkinson’s advocacy and working with PAN?
ML: I met Laura Jane Cohen, then grassroots director for PAN, at the first 2002 Young Onset Parkinson Conference in Albuquerque, NM. We spoke in depth about advocacy and I learned her father had Parkinson’s. Laura Jane told me she needed an advocate in Louisiana and I said, “sign me up!”
PAN: You’ve been with PAN for a long time. What has made you stay involved?
ML: Being an advocate for my disease is a powerful experience. It can give you a sense of purpose when you might otherwise feel lost. It is also a good way to remind yourself of all that you have and all that you can still do to impact your own life and the lives of others.
PAN: How do you help educate people about Parkinson’s disease?
ML: I learn so much at each PAN Forum that I take back to my state and also from my doctor of 13 years, who has had me attend many pharmaceutical dinners and conferences. Thanks to the insight of PAN and Dr. Rao, I am well-prepared to speak at support groups, symposiums, conferences, in news articles, and present yearly to first- and second-year medical students on how to spot and diagnose Parkinson’s as well as the current treatments available.
PAN: You put on a great event called Louisiana Walks for Parkinson’s. Why do you do that each year?
ML: We have a great tradition and turnout for our walks since 2003. We find the walk not only a great way to fundraise but a wonderful opportunity to raise awareness for Parkinson’s.
PAN: Part of your event is also fundraising for PAN. Why is this also important to you?
ML: PAN has been our designated partner for the last two years. When deciding who to raise funds for our walk we felt as PAN Advocates, that it was time to give back as PAN has been our rock. We would not be where we are today with issues like research funding and therapy caps, for example, if it were not for PAN.
PAN: What are some of the biggest challenges you have faced as an advocate?
ML: I would have to say of the years advocating for embryonic stem cell research and funding for somatic-cell nuclear transfer. Some representatives would not let us in their office. One staffer told us if we even mentioned it he would end the meeting and escort us out of the representative’s office.
PAN: What has felt like “success” during your time as an advocate?
ML: Success is hard to measure, but I would have to say first and foremost being able to continue to advocate and fundraise for PAN and my fellow people living with Parkinson’s has been very rewarding for me. I’ve developed such a close relationship with our congressional offices, especially Senator David Vitter (R-LA) and Senator Mary Landrieu (D-LA), that when I see them in a restaurant in New Orleans they walk over and say hello.
PAN: How do you interact with your Representative and Senators and their staff?
ML: Most of the staff of Senators Vitter and Landrieu and Reps. Steve Scalise (R-LA) and Rodney Alexander (R-LA) have remained the same so a phone call or email to the staff usually warrants a quick response, which is much appreciated. I had two staffers who emailed me to let me know they were leaving their current positions and wanted to say goodbye and would miss our yearly visits. I do get a warm feeling that they know who we are.
PAN: What advice do you have for people with Parkinson’s who want to become more involved with PAN?
ML: We need you and your voice. Stand up and be heard and fight for your cause. If you don’t, who will? You will never know how fulfilling and empowering it is to be a part of PAN until you have attended a Forum.
Please sign up to be an e-advocate at the very least and respond to action alerts, as well as forward them to your friends and family. You do not have to have Parkinson’s to contact your congressional office, only a heart is needed.
To contact Michelle or other PAN advocates, visit PAN in Your State.