"When You Advocate, You Cease Being a Victim"

Parkinson’s Action Network (PAN) will honor Parkinson’s advocate Monnie Lindsay with the 2013 Milly Kondracke Award for Outstanding Advocacy at this year’s Morris K. Udall Awards Dinner on October 8.

Monnie is currently the Nebraska State Director in PAN’s volunteer grassroots network and serves on PAN’s Grassroots Advisory Board. She has been involved with PAN since 2005, serving on PAN’s Board of Directors from 2006 through 2012 and as the vice chair from 2009 through 2012. Previous to her board service, she served on PAN’s Grassroots Policy Committee. Monnie also co-authored the Parkinson’s community’s suggested new definition of Parkinson’s disease for the U.S. Department of Health and Human Services. 

Monnie’s own personal journey with Parkinson’s started when she was diagnosed in January 1994 at 38 years old. At the time, she was only four years out of law school and practicing law in Chicago. She said that she always had an interest in advocacy and took several classes in health policy while attending Georgetown University Law Center, which helped shape her work since then. After she was diagnosed with Parkinson’s, she looked for ways to combine her interest in advocacy while navigating the disease.

Monnie Lindsay with Dennis Schmidt and Nebraska Senator
Mike Johanns (right) during the 2012 PAN Forum.

“Monnie is one of the most outstanding advocates that PAN and the larger Parkinson’s community have had,” said Amy Comstock Rick, PAN CEO. “She has brought a depth of experience and knowledge to PAN and the Parkinson’s community that has truly shaped the way we do our work today.”

In addition to her work in advocacy, Monnie is also the vice president of the Parkinson’s Health Development (PHD) program. PHD was born at a PAN Forum a few years ago and offers exercise classes for people with Parkinson’s. Monnie said she almost as proud of the work she’s done with PHD as she is of her work for PAN.

Recently Monnie answered a few questions about her experience with Parkinson’s, PAN, and how she feels about receiving the Milly Kondracke Award for Outstanding Advocacy.

PAN: Why do you advocate on behalf of the Parkinson’s community?

ML: I frequently say, “when you become an advocate, you cease being a victim.” I believe that when you get out there and you take a stand and use your voice, it gives you strength to continue this dance with the disease. I attended my first PAN Forum in 2005 and I loved it. It energized me. To see 300 people with Parkinson’s all in the same room and then spreading out to Capitol Hill … it was inspiring. My work with PAN is one of the good things about having Parkinson’s. To have work I love and feel passionate about is a great thing. It keeps me engaged intellectually when I have a disease that can affect cognition.

Advocates Dennis Schmidt and Monnie Lindsay meeting with staff in
Senator Johanns’ office during the 2012 PAN Forum.

PAN: What did you think when you first heard that you’d be receiving the Milly Kondracke Award for Outstanding Advocacy?

ML: Quite frankly, I felt honored and unworthy. Milly was such a fighter; I wish I had known her personally. I did not have the honor of meeting her, but I served on the PAN Board for six years with her husband, Mort Kondracke, who is also a fighter and champion for those of us with Parkinson’s. I am delighted to be connected with Milly’s legacy.

PAN: What has been your most memorable moment as a Parkinson’s advocate?

ML: It was having a member of our congressional delegation say yes to all our asks. At the 2011 [PAN] Forum, our asks were a little bit different and I believe we had three of them. He heard us out and very quickly said, “yes, yes, yes.” I had expected that he would only give us one of them.  It helped prove that together we have a bigger voice.

PAN: What advice would you give someone else who just recently found out they had Parkinson’s disease?

ML:  Live your life as much as possible as if you don’t have the disease. Keep a sense of humor. Laugh at the disease. It will keep you from crying.

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About the Milly Kondracke Award for Outstanding Advocacy
Milly Kondracke was diagnosed with Parkinson’s disease in 1987 and, after a brave struggle, lost her battle in 2004. Not only did she fight the disease with extraordinary dignity, she served tirelessly and effectively for an increased federal commitment to Parkinson’s research. Milly humanized Parkinson’s and educated lawmakers about the importance of a federal commitment that lives up to the scientific potential. Milly’s incredible strength of spirit and steadfast devotion to advocacy and education are the inspiration for the Milly Kondracke Award for Outstanding Advocacy. The Milly Award is presented annually to an advocate who embodies the incredible strength of spirit and commitment to advocacy that Milly demonstrated every day.

The Morris K. Udall Awards Dinner will take place on October 8 at the Ronald Reagan Building and International Trade Center in Washington, D.C.  For more information on the Udall Awards Dinner, please click here.

Date originally posted: July 26, 2013.