Giving Back to Community
How the Michael J. Fox Foundation Is Energizing Parkinson's Research
This year, the one million Americans who have Parkinson's Disease have reason to look forward with optimism. They may soon get something deceptively simple: a normal, symptom-free day.
By the end of 2017, several new drugs could hit the market to manage debilitating aspects of Parkinson's, like tremors and rigidity, through a steady delivery of dopamine. A few treatments in development to help ease the severity of the symptoms include an inhaler that patients can quickly use for pain relief and a breath-strip-like product that could be placed under the tongue to restore motor functions.
Such advancements are largely thanks to the Michael J. Fox Foundation, whose aggressive funding of Parkinson's research has pushed many new drugs into development. Actor Michael J. Fox, 54, who was diagnosed with Parkinson's at age 29, brings a personal sense of urgency to the cause. He built the organization around what patients like him want: to accelerate medical breakthroughs and drive better treatment.
Since launching in 2000, the nonprofit Michael J. Fox Foundation has brought a shot of adrenaline to the stagnant once, slow-moving field of Parkinson's research. It has funded over $450 million in research and about 70 clinical trials. Most major pharmaceutical companies now have Parkinson's programs, which wasn't true 20 years ago.
"The goal of the Foundation is to go out of business—to get a cure," says board member Andrew O'Brien, a managing director at JPMorgan Chase.
Unlike many disease nonprofits, the Michael J. Fox Foundation puts most of its energy into research. Of every dollar it spends, 89 cents go to research. There are PhDs on staff to help make funding decisions. Patients contribute to and benefit from data about the disease through a tool called Fox Insight. The organization has gotten 55,000 people involved in clinical trials.
For Parkinson's Awareness Month, the Foundation aims to raise $1 million and get more patients to participate in research.
Though people can live with Parkinson's for decades, the disease is debilitating, with the average age of onset being 57. Each patient is affected differently, but symptoms typically include tremors, rigidity and slowness of movement, which can impact the ability to work. Medical expenses can cost approximately $22,800 a year. There are currently pills on the market to alleviate some of these symptoms, but nothing to actually slow the irreversible progression of the disease.
Scientists don't know what causes Parkinson's, but genetics and environment both play a role. In 2000, genetics weren't even part of the conversation, but the Michael J. Fox Foundation helped to change that by providing significant funding to researchers working to translate basic genetics into practical treatments for the disease.
Another major priority for the Foundation is to identify biomarkers, which are biological warning signs that indicate whether someone is at risk.
"Imagine if you were trying to test drugs to treat hypertension but had no way to measure blood pressure or cholesterol … We don't yet have those objective, predictive signals in Parkinson's" explains co-founder Deborah Brooks.
The Foundation takes a pragmatic approach to drug development by strategically investing in the early, risky stages to put data around an idea. If it's promising, pharmaceutical companies are more likely to invest at a later stage. Most drugs take 20 to 30 years and over $1 billion to develop, which is why new treatments are only now edging towards completion.
This year the foundation aims to raise $100 million in donations and elevate the public profile of Parkinson's. Many Americans now see Michael J. Fox as the familiar and kind face of the disease—and connect with it.
"Michael's personal story has transformed awareness around Parkinson's," says Brooks. "He simply is a beloved human … for the patient community in particular, he has a stunning and unique brand of optimism."
Fox's efforts make patients more hopeful than ever that we will find a cure.
Rebecca Dalzell is a journalist and historian. Her writing has appeared in The Washington Post, New York magazine, Travel + Leisure, Time Out and other publications.