Why I'm Donating my Birthday to the Michael J. Fox Foundation for Parkinson’s Disease Research
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I believe there is such a thing as a spirit.
It may be the only thing the body can’t deny, like the irresistible child of a chronically cruel parent. I will now tell you a story that has nothing to do with Parkinson’s Disease (PD). But before you reach for the SPAM folder, bear with me for a second (close friends tell me my conversations always have a destination, let’s say it’s Greece. But you may go through customs in Botswana to get there.)
Something strange happened this year. My family had gathered in New York to celebrate my aunt’s birthday. A beloved relative had died not long before then. A chronic illness—not Parkinson’s, I’ll get there—had made it difficult for her to show up for things in person. But she would show up in every other way: a phone call, a bunch of flowers, a promise of a party at her place the next time we visited. Six of us showed up early at the restaurant that day, so we had a drink at the bar. Her drink of choice was a gin martini. Six of us were there. Seven drinks arrived. The unclaimed drink was a gin martini. Even if some mix-up in the order caused the extra drink, her spirit was on our minds again.
LOVED ONES WHO LIVE WITH PARKINSON’S
I am reminded again of the spirit when I think about Parkinson’s Disease. Two important people in my life developed the disease in their later years. I felt my blog and podcast were the place to discuss them because, like me, they had that mysterious urge to imagine and create.
The lady grew up in Athens, Greece and knew several of the great Athenian artists of the mid 20th century. Animals were often the subjects of her paintings, and she would sooner nurse a stray cat or dog back to health than buy one of her own. She filled her garden during big family barbecues with the people and animals she loved where food and conversation crossed generations, and many interconnecting tables.
The man came from a Greek family in Massachusetts and worked his way up the executive ranks as the creative head of major advertising accounts on both sides of the Atlantic in the legendary Mad Men 1960s and later. He was a mentor to me and countless others, inspiring my own enthusiasm for his field, and giving others a reason to consider my work.
What compels me to write about these remarkable people is the strength of spirit they had that they gave me and their loved ones as gifts, like that mysterious drink. It seems ironic that a symptom of the disease is memory loss, as their loved ones were in their thoughts every day. How ironic it is, then, that slow movement is a symptom, as they were in constant motion.
THE MICHAEL J. FOX FouNDATION
For those who are not familiar, Parkinson’s Disease (PD) is a neurological movement disorder whose symptoms include muscle tremors, poor coordination, and memory loss. According to the American Parkinson Disease Association, It affects over one million Americans and an estimated 10 million people worldwide. More information than ever about Parkinson’s exists online, but ever more remains unknown. There still is no cure. The web has liberated the voices of so many patients of all walks of life, who often approach the disease with cautious optimism and and the urge to stay ahead of the curve by using the latest tools and technology to their advantage.
Technology put the Michael J. Fox. Foundation (MJFF) on my radar again (I had been a fan of Fox as an actor, who first caught my ear for his starring role as the bookish Milo Thatch in Disney’s Atlantis: The Lost Empire. I then worked backwards to Back to the Future, and his earlier films, and eventually learned he was behind the Foundation).
The organization came to my attention again recently when the news broke that MJFF had pledged more than 120,000 dollars (more than 110,000 euros) to develop an app that allows Parkinson’s patients to monitor their symptoms from home. The project is a clever partnership with Greek professor George Roussos from the University of London’s School of Business, who develops wearable device apps that record Parkinson’s motor symptoms, including the distinctive tremors. The funding will go into a software toolkit that will allow him to analyze data from his cloud-based symptom tracking apps, which will ease symptom tracking for individual patients, and pool data that will forge Parkinson’s research forward on the patient and public health levels.
The foundation continues to do all kinds of great work, and I am particularly impressed by their multifaceted approach to the disease. MJFF funds and promotes experimental treatments, organizes research studies, rallies for policy changes to improve the livelihood of patients, and builds community around those affected. One initiative is the Fox Trot 5K run/walk that raises hundreds of thousands of dollars every year. $0.88 of every dollar is donated to its research programs, and the majority of proceeds are poured back into the foundation.
WHY I GAVE
More than all the above, I admire the quality of spirit and the sense of hope the organization brings. Medical advances have made a staggering dent in PD. But a body that feels alone leaves the spirit behind. Then the body goes too. Studies have shown the power of hope in the lives of patients. John Bowlby’s studies showed that abandoned children would not eat without if they did not feel loved. Patients are the same way. They lose hope, even if they have the best care money can buy. It seems to work the other way around, too. The absence of hope may shut us down, but the presence of hope gives us a glimpse of infinity. For patients, research shows that hope makes it easier for them to cope, and may even have a direct impact on healing. hope’s greatest gift is resilience. It’s a gift patients and researchers can benefit from. For patients, hope can mean the end of suffering. For researchers, like the team at MJFF, it can mean the end of Parkinson’s.
This kind of spirit is what I admire most about the Foundation. It’s the reason behind my donation this year on my birthday. Spirit is what I come away with when I think about the organization, like the inexplicable glass on the edge of the table. I hope the foundation does for you what it did for me and that you will consider donating.
Happy Holidays to you and yours!