The Parkinson’s Disease Conundrum

I’ve come to the conclusion that there is a fundamental problem in the PD community in my opinion. There are just way too many voices! We have organizations like the APDA, the Parkinson’s Foundation, the Davis Phinney Foundation, PD Avengers and the Michael J Fox Foundation to name just a few. I could probably list about 100+ websites, local, national and international that have information about PD and recommendations on how to live with the disease and the latest medical research to find better treatments and a cure. I just feel there are so many voices out there that it confuses not only those of us who suffer with the disease but also the general public as well. In the excellent book Ending Parkinson’s Disease – A Prescription for Action in Chapter 3 – Vanquishing Indifference, it really highlighted the need for a grass roots movement to help find a cure for PD. To paraphrase one of the books co-authors Dr. Ray Dorsey, “Members of the Parkinson’s community must raise their individual and collective voices and tell their stories in order for us to get the attention, understanding, and funding we need to stop the rising rates of prevalence and ultimately end PD. We follow in the footsteps of successful social movements like Mothers Against Drunk Driving (MADD), the March of Dimes and the HIV/AIDS movement, all of which effectively leveraged their personal stories into meaningful change. Our mission is urgent. PD is the fastest growing neurological disease in the world. Why isn’t it being recognized as such? Again, we’re not telling our stories deeply, fully or loudly enough. Together, we can fix this.” So, I ask the question where is the one single PD organization that is following the successful work done by organizations like MADD or ACT UP? Where is the single clarion voice of those of us in the PD community to be found? Why hasn’t anyone afflicted with PD in the entertainment industry, politicians or the wealthy elite that have great influence and power become a single inspiring and loud shrill cry for a call to action.

On October 11, 1987, half a million people gathered in Washington, DC, to see the football-field-sized AIDS Memorial Quilt displayed on the National Mall. The quilt contained 1,920 fabric panels, each approximately the size of a grave, commemorating the life of someone who had died of AIDS. One year later, the quilt had grown to include over 8,000 panels and was displayed on the Ellipse in front of the White House. By 1996, nine years after Jones started assembling his memorial, the quilt covered the entire National Mall. Today, the quilt is shown at exhibits throughout the United States and remains the largest community art project in the world. So, I ask, where is the quilt for Parkinson’s Disease today? While it is true that people with PD die with PD and not from it, it still negatively and adversely affects the lives of over 1 million people in the United States and over 10 million worldwide with nearly 90,000 people in the U.S. diagnosed with PD each year. As Larry Gifford, founder of the PD Avengers said recently at his website, “We need to wake up. The whole world needs to wake up. It can strike anybody, anytime, anyplace. Parkinson’s is not going away unless we do something drastically.” The question still remains, where is the grass roots community organization that demands that something drastically be done NOW? Last Thursday, April 11th was World Parkinson’s Day. Where was the media coverage of this significant day to all of us on the evening news?

What I see are a lot of PD organizations, each with their own board of directors and each with their own agendas. I see many of these large organizations, while being technically nonprofits, pay their executives that don’t have PD quite well. For instance, according to the independent Charity Watch organization (charitywatch.org) in 2022, Deborah W. Brooks the Co-Founder and CEO of the Michael J. Fox Foundation was paid an annual salary of $1,423,665 and Todd Sherer their Chief Mission Officer made $1,310,814. Do we really want our donations to help pay for million dollar plus salaries? You see, Parkinson’s Disease unfortunately for us, has become big business for many of these organizations and businesses need money to operate. Do these organizations have on their boards of directors individuals afflicted with PD who actually have a vested interest in doing something drastically as Larry Gifford had said? For instance, the Parkinson’s Foundation has 28 people on their Board of Directors. Of these 28, only 2 (7%) are actually afflicted with PD (www.parkinson.org/about-us/leadership/board-of-directors ). The Michael J. Fox Foundation has 50 people on its Board of Directors. Of these 50, only 1 (2%) is afflicted with PD (www.michaeljfox.org/leadership-staff/board-directors).

In 2022 the National Institute for Health or NIH funded a total of $259 million dollars in PD research. By contrast, in 2022 the NIH spent $3.1 billion dollars for AIDS research and $3.7 billion dollars for Alzheimer’s research. An estimated 1.2 million people in the U.S. had HIV at the end of 2021 according to the Centers for Disease Control and Prevention (CDC). A diagnosis of AIDS, while tragic, is no longer a death sentence thanks to medications that are available to treat the disease. So then, why does AIDS research receive a whopping 1100% difference in funding than PD? Obviously, the voices in the AIDS community are much louder and the ACT UP grass roots movement works much better than the current PD paradigm. What do you think? What is needed to create a national grass roots movement with a very loud and distinct voice to be heard by the dysfunctional and hopelessly divided government to find a cure for Parkinson’s? Feel free to leave your comments below.