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Neurology Now:
doi: 10.1097/01.NNN.0000429064.17550.cf
Departments: The Waiting Room

Advocacy: The 2013 World Parkinson Congress

Farley, Todd

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In 2004, the director of the National Institutes of Health, Elias Zerhouni, M.D., suggested the Parkinson's disease (PD) community from around the globe—researchers, clinicians, patients, and caregivers—should come together to share information and experience. He hoped such a meeting would help them expand their knowledge and find a common voice. Robin Elliott, executive director of the Parkinson's Disease Foundation, agreed. He promoted the idea to Stanley Fahn, M.D., H. Houston Merritt Professor of Neurology and Director of the Center for Parkinson's Disease and Other Movement Disorders at Columbia University Medical Center in New York, NY, and Fellow of the American Academy of Neurology. With Dr. Fahn on board, the non-profit World Parkinson Coalition was established.

“The sole mission of the World Parkinson Coalition is to host the World Parkinson Congress (WPC) every three years. No other group globally could take this task on,” says Elizabeth Pollard, the executive director.

The WPC is unique in the PD community in that it welcomes everyone under the same roof, according to Pollard: doctors, researchers, patients, caregivers, and families. “I found it fascinating to attend sessions for patients and families, and to see that other scientists were there to learn more about patient needs and concerns,” says Story Landis, Ph.D., Director of the National Institute for Neurological Disorders and Stroke.

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The meeting's value became obvious to Pollard at the first WPC, in Washington, D.C., in 2006. She remembers speaking to a renowned Swedish scientist who called the meeting “amazing.” He'd brought a number of his junior scientists to the event and discovered it was the first time many of them had ever met someone with PD.

The third meeting will be held this year in Montreal, Canada, from October 1 to 4. Funding comes from participant registration fees and philanthropic support, including donations from corporations (mostly pharmaceutical but some non-pharmaceutical) and foundations. This year's donors include the National Parkinson Foundation, the Parkinson's Disease Foundation, Parkinson Society Canada, and the Michael J. Fox Foundation for Parkinson's Research.

Dr. Fahn says the challenge is establishing a program that is valuable and accessible to all. “How do we create an event that interests everyone?”

“We want to feature cutting-edge science, but we also need to keep information accessible to people who aren't scientists,” Pollard says.

Previous WPCs have included sessions that allow attendees to actively participate as they learn more about PD. The 2010 WPC featured dance and tai chi lessons in addition to lectures such as “Olfactory Impairment and Other Pre-motor Symptoms in PD,” “Progress Toward a Diagnosis of Pre-Motor PD,” and “Deep Brain Stimulation and Parkinson's Disease.”

The first WPC was designed mostly by healthcare professionals, with little input from people with PD, but “that has completely changed now,” Pollard says. As evidence of this, Dr. Fahn mentions the plenary talks that are given each morning of the event: a topic such as the genetics of PD will be discussed through the lenses of researchers, doctors, and patients alike. The unique perspective brought from each view helps paint a broader picture of the disease—and generates interest and excitement.

“A real buzz comes out of these meetings,” Dr. Fahn says. “The patients and caregivers bring a sense of reality to it. They are encouraged by the research and in turn encourage the scientists and doctors to keep moving forward. People in the PD community who might not talk to each other regularly are able to communicate.”

The WPC also has an effect on the venue that hosts it. “We tell them ahead of time that we're not coming to your city just to have you host a meeting,” Pollard says. “Our objective is to make sure the people who live with PD in that city are better off than when we came.” Hotel general managers, airport staff, and city taxi drivers are all invited to free instruction.

“It's like PD 101—the 10 things you need to know to help someone with PD,” Pollard says.

But the most important legacy of the WPC is the work that results from it. A group of international nurses who met at the 2006 event joined forces to write the book Comprehensive Nursing Care for Parkinson's Disease. Heather MacTavish's book Songs, Science and Spirit came to fruition after her attendance of the 2006 WPC. The collaboration between a German scientist and a person with PD from England who met at the 2010 WPC resulted in a recent grant of 2.4 million Euros for the development of a “PD patient-friendly interface for equipment at home that helps the patients.” At least two people with PD who attended recent WPCs returned home motivated to set up patient advocacy organizations in their native countries—one in Australia, the other in South Korea. And it was while preparing his video submission to the 2010 WPC that Carl Hernz, who has PD, discovered that the 1925 silent film Phantom of the Opera was actually filmed in 3-D. Hernz has since meticulously reconstructed the film to its original format and hopes to use it to raise funds for PD research.

©2013 American Academy of Neurology

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