The World Parkinson Coalition Is Hoping to Close the Door on Parkinson's

No one wants to be here "celebrating" another year of work to end Parkinson's. The idea is to advance the science, find a cure, and close the door on this disease.
09/25/2014 04:16 pm ET Updated Nov 25, 2014

The recent death of Robin Williams was tragic, but when his widow later disclosed that he was struggling with anxiety, depression, and the early stages of Parkinson's it put a much-needed spotlight on a disease that, unfortunately, is growing more common. Parkinson's is a chronic and progressive neurological disease often recognized for tremors, muscular rigidity, slowness in movement and impaired balance. But most people with PD will tell you that the most challenging symptoms are the ones people cannot see, such as depression, sleep disorders, gastrointestinal complications, pain and fatigue. It's these "non-motor" symptoms that impact the quality of life for patients and their family members.

A friend of mine who lives with Parkinson's once said, "Parkinson's is not a death sentence; it's a life sentence." She said she felt trapped in a body that didn't work the way it was supposed to work. She's not alone. Parkinson's affects more than one million people in the U.S., with estimates of 7 to 10 million people worldwide living with the disease. We still don't know the cause and there is no cure.

Why should you care? The world is aging and that makes neurodegenerative diseases like Parkinson's everyone's business. The fact is, people are just living longer and most people with Parkinson's are diagnosed over the age of 60. If you don't know someone today who is living with Parkinson's, you will tomorrow, or next week, or next month. The burden of this disease on healthcare systems globally is tremendous, making it even more pressing that we work together to find a cure.

The path to a cure involves the whole community of scientists, doctors, nurses, people with Parkinson's and caregivers. Involving the entire community to find a cure for Parkinson's isn't feel good rhetoric; it's a model with a proven track record of success. When AIDS first appeared in the U.S., doctors were at a loss to understand the disease much less stem the tide of deaths. In the early eighties, gay men formed the first AIDS advocacy organizations, which involved Hollywood actors, writers, scientists, families, and anyone who had been affected by the illness. These groups worked collaboratively in their push for greater funding for research and access to affordable treatments. They even changed the culture of the FDA, pushing the agency to begin a "fast track" policy for quicker access to lifesaving drugs.

With the encouragement from the head of the National Institutes of Health in 2003, the World Parkinson Coalition was founded in 2004 for much of the same reason: to bring the Parkinson's community together. Allowing for people with Parkinson's and their family members to meet researchers, and researchers to talk to clinicians and allied health professionals, we can ensure everyone learns more about current research, best treatments options, advocacy, and the most important patient needs. Working together we can accelerate the discovery of a cure and until the cure is found, we can better meet the needs of people living with Parkinson's. Researchers cannot advance the science without patients helping them with their studies and people with Parkinson's cannot get better treatments or a cure without the researchers. This is a team effort and should be recognized and embraced as one.

At the first World Parkinson Congress in 2006, Parkinson's nurses from across the globe came together for the first time in one room to learn from each other and network. Two leading Parkinson nurses from the United States were so inspired by this exchange that afterward, they pulled these leaders together to create a book written by nurses for nurses who care for people with Parkinson's. This is still one of the main books on the U.S. market today that targets Parkinson's nursing. On a different occasion, I met a man living with Parkinson's who told me that before attending the Congress he was depressed and felt alone. But after meeting and hearing directly from scientists for the first time, his outlook changed and he had great hope for medical research. He actually felt less alone because he had discovered all of these great young investigators who were dedicating their lives to finding a cure.

No one wants to be here "celebrating" another year of work to end Parkinson's. The idea is to advance the science, find a cure, and close the door on this disease. I tell my friends with Parkinson's that I'd much prefer being out of a job, if it meant they were cured. Working together is our best chance to make that happen.