An interview with George Manahan from the West Virginia Parkinson’s Support Network & the Michael J. Fox Foundation on August 23, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background and what got you involved with awareness.
I grew up in Morristown. NJ and moved to West Virginia in 1979 to attend Bethany College. After college, I worked as a radio and TV reporter for various media outlets in West Virginia. In 1990, I was hired as the press secretary for Governor Gaston Caperton. After three years, in the Governor’s Office, I started my own public relations business in a garage apartment on the east end of Charleston (WV).
I’ve always been involved in advocacy work, even before I was diagnosed with Parkinson’s disease. Whether it was in high school, college or in my professional career. Our company slogan is: “Do good work. Make money. Have fun. Give back.” Before I was diagnosed with Parkinson’s disease, I served on the state and regional boards of directors for the Multiple Sclerosis. My sister has MS and I wanted to support her.
As an advertising and public relations agency, we have always volunteered our work or “advocated” for causes we thought made our community a better place to live. For example, we helped to raise millions of dollars to renovate a new downtown library. We also coordinated a campaign to retore funding to our state public broadcasting system.
Can you tell me more about your advocacy?
Advocacy is what I call the one leg of a “three-legged” stool. The other two are fundraising and services.
Over the ten years of the West Virginia Fox Trot, we have raised $530,000 for The Michael J. Fox Foundation and about $75,000 for local programs.
We have advocated for legislation in the state legislature and Congress, most notably passage of a State Parkinson’s Registry. West Virginia’s U.S. Senator, Shelley Moore Capito, is the lead sponsor of The National Plan to End Parkinson’s Act legislation in the Senate. I am proud that every member of our Congressional team has signed on to sponsor the bill. But there is still work to do to get the legislation passed Congress.
And last, but certainly not least, we have developed free programs to help those families who are struggling with Parkinson’s disease. We provide free weekly exercise classes, including Rock Steady Boxing, support groups for People with Parkinson’s disease, caregivers, and annual Parkinson’s Symposium.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
In 2010 at the age of 49, I was diagnosed with Parkinson’s disease. After a year of self-discovery (basically coming to grips with my diagnosis), I started looking for a local support group. There wasn’t one. What made matters worse, I didn’t know anyone with the disease. So, I started looking for ways where I could interact with people with PD. There weren’t any. Since my company organizes events for clients, I started organizing a 5k walk and run to benefit The Michael J. Fox Foundation. I had no idea if one or 200 people would show up for that first event. Amazingly, over 200 people attended the first Fox Trot for Parkinson’s Research, and we raised over $30,000.
That first race in 2013 led to free weekly exercise classes, monthly support groups, statewide family caregiver forums and Parkinson’s symposiums.
What type of goals do individuals with Parkinson’s awareness have when working with you?
They want a cure. I want a cure. More importantly, people with Parkinson’s want to stop, reverse or end Parkinson’s disease. With the new discovery of a biomarker, we will soon, with 92 percent accuracy, detect Parkinson’s disease even before symptoms show up. That means we can develop therapies for people before they start losing dopamine-producing cells in their brain.
What effect can your advocacy have on an individual with Parkinson’s awareness?
If you think of it, one person can make a tremendous impact on the course of Parkinson’s disease. Jimmy Choi has touched lives throughout the world with his appearances on American Ninja Warrior. But you don’t have to climb walls to make an impact. Your help with The National Plan legislation in Congress could lead to more research funding, which could lead to a cure or at the very least, better therapies for people with Parkinson’s and that is a way you can make an impact sitting at home.
What would you like to see as a future goal for your advocacy?
My future goal is to see that the West Virginia Parkinson’s Registry is up and running and that The National Plan legislation passes Congress. But my goals are more global than that.
As I am handing off my PR and Advertising business to my staff, I would love to focus my energy on establishing true statewide Parkinson’s chapter here in West Virginia. The current Parkinson’s structure is unlike other patient groups that are more effective in advocacy, fundraising, and providing services.
Organizations like the Parkinson’s Foundation and The Michael J. Fox Foundation (there are other groups) do a great job, but there may come a time soon that the community may need a more comprehensive structure within each state similar to other patient organizations. A recent study just noted that 40 percent of people with Parkinson’s disease don’t see a neurologist for care and only nine (9) percent of patients see a Parkinson’s specialists. That’s not a good percentage. We need more Movement Disorder Specialists. We need better services in rural states like West Virginia. The National Plan legislation may solve the funding issue, but somewhere we need to solve the “structure’ issues that we have.
What events do you participate in?
Currently, it’s difficult for me to participate in any events except for those that I am currently committed to. I serve on the advisory board of the West Virginia Parkinson’s Registry, coordinate our big fundraising event, the Fox Trot, and do what I can to support passage of The National Plan legislation. But it’s my hope to travel around to Parkinson’s events around the country to support the amazing things that are being done by so many in the Parkinson’s community.
For those who may want to participate in our Fox Trot, either in-person or virtually, you can register at www.FoxTrotWV.com.
How does this also assist the caregivers?
Everything we do includes caregivers. Family care partners are the glue that holds the family unit together as those of us with Parkinson’s disease progresses with the disease. We are getting ready to start a caregivers-only support group in Charleston. Last year, we held a statewide Family Caregiver’s Forum with the AARP, and Alzheimer’s Association.
How can someone get in touch? What is your website?
We have two websites. The first website provides information about the services that are available for families with Parkinson’s disease: www.ParkinsonsSupportWV.com. The second website promotes our Fox Trot fundraising event: www.FoxTrotWV.com.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Your one act can change people’s lives.
How can others also become advocates for awareness?
Get involved in some way.
Tell your story. Everyone has a Parkinson’s story to tell. Whether you are a person with Parkinson’s, a family member, and/or caregiver, you have a story to tell. Legislators and others need to hear your story. Whether that is through advocacy by contacting your congressional representative or by signing a national petition. You can also volunteer at a local support group or exercise class. Learn more about Parkinson’s advocacy or join the MJFF advocacy webinar on Aug. 30 by e-mailing firstname.lastname@example.org.
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?
I’ve probably said (types) too much already. But thank you George and the Together for Sharon group for your support of the Parkinson’s movement.
With US Senator Joe Manchin from WV.