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WPC: A Culture of Collaboration
On February 22, more than 3,100 members of the Parkinson's community flocked to the Washington, DC Convention Center to attend the first-ever World Parkinson Congress (WPC), an international forum for discussion of the best scientific discoveries, medical practices and caregiver initiatives related to Parkinson's disease. In an unprecedented event, physicians, scientists, allied health professionals, caregivers and people with Parkinson's came together for five days to create a worldwide dialogue with the common goal to help expedite the discovery of a cure and best treatment practices for this devastating disease.
Almost everyone agreed that the WPC was a success on all fronts - the target number for attendance was exceeded, the sessions were packed and individuals from all segments of the Parkinson's community mingled, exchanged views and made connections. People with Parkinson's, basic scientists and clinical researchers traded perspectives on such subjects as the state of science, the barriers to treatment and what is needed to improve the quality of life. Physical and speech therapists swapped pointers with caregivers on the best mechanisms to improve balance and voice. People were talking, and customary boundaries began to give way.
The culture of collaboration was set at the opening ceremonies on Wednesday evening, February 22, when Stanley Fahn, M.D., Chairman of the Congress, delivered warm welcoming remarks to a crowd unlike any he had addressed before. Dr. Fahn, who is also the Scientific Director of the Parkinson's Disease Foundation (PDF), thanked the many people who were instrumental in the planning, promotion and staging of the Congress, and reminded everyone of how special it was for the various groups in the community to unite in the fight against Parkinson's. He then introduced Michael J. Fox, who drew thunderous applause with his characteristically down-to-earth yet powerful remarks. Mr. Fox reminded us all that, in order to make a difference in the life of a person with Parkinson's, the development of new therapies must be faster, better and more effective than ever before. His words resonated with a group that was attending the WPC for just that purpose.
On the heels of the Mr. Fox's rousing remarks was a reminder of the global effort to cure Parkinson's from Mary Baker, President of the European Parkinson's Disease Association. Ms. Baker brought the international spirit to the ceremony with the Global Declaration on PD, signed by representatives from all over the world including leaders of government, science and patient-voluntary associations.
She was followed by Oliver Sacks, M.D., neurologist and author of the acclaimed book Awakenings. Dr. Sacks detailed his observations over the years of how creativity can play a role in treating Parkinson's disease, a concept that he affirmed by serving as Honorary Chair of a unique exhibition at the Congress entitled Creativity and Parkinson's. This outstanding display featured the artwork of people with Parkinson's from around the globe, including paintings, poetry, sculpture, graphic design and so much more. A "gallery" was constructed in the Exhibit Hall to showcase these works and to allow artists the opportunity to express themselves and explain how creative activities have helped them to live with the disease. PDF was particularly pleased with the overwhelmingly positive response to this segment of the Congress since it was created, managed and produced by PDF staff.
Dr. Sacks also reminded attendees to stop by the History of Parkinson's exhibit to learn about the discovery of Parkinson's and what knowledge we have gained over the years. The opening ceremonies were concluded by Austrian choreographer and dancer Melanie Maar, who presented a touching dance piece called "On and Off" that was inspired by her father who has Parkinson's disease.
Of interest to every attendee was the recent news in PD science. On Thursday, the WPC held a media briefing to bring reporters up to date on Parkinson's treatments and what new possibilities may be coming out of the pipeline. Karl Kieburtz, M.D., University of Rochester School of Medicine and Dentistry, announced that investigators in the NET-PD trial, sponsored by the National Institute of Neurological Disorders and Stroke (NINDS), had reviewed study data on two agents, creatine and minocycline. The investigators recommended that NINDS move forward with further studies to assess the agents' potential to be neuroprotective in Parkinson's.
Another group of physicians and scientists later met with news media to explain the current challenges to living with Parkinson's disease. Laura Marsh, M.D., Johns Hopkins University School of Medicine, discussed the psychiatric aspects of the disease, including compulsive behaviors, depression and anxiety. Dr. Marsh's work was of special interest given current research that suggests that there may be a link between some dopamine agonists and compulsive behaviors.
In a third press briefing, researchers explained the nuts and bolts of finding better treatments for Parkinson's disease. Howard J. Federoff, M.D., University of Rochester School of Medicine and Dentistry, explained the importance of funding "translational research" - that is, research that takes findings from basic science in the lab and tests its applicability as a treatment in humans. This area has long been cited by many in the PD community as one that is seriously under-funded. Another key topic, the genetics of PD, was addressed by Thomas Gasser, M.D., University of TŁbingen (Germany), who reviewed findings of mutations on the LRRK2 gene. These mutations appear to cause 10 to 15 percent of familial (inherited) PD and seem to be the most direct link between the role of genetics and Parkinson's disease. Researchers hope that studying LRRK2 and other genes will help point to potential treatments for Parkinson's.
While the scientific presentations were heavily attended, sessions given by people with Parkinson's were also in high demand. In an interesting twist, David Heydrick, M.D., a neurologist who has Parkinson's disease, detailed his theory that a well-rounded approach, including diet, exercise and support, is an optimal way to treat PD. Tom Isaacs, of the United Kingdom, demonstrated the amazing power of positive thinking in a talk focused on how he has turned his Parkinson's diagnosis (10 years ago at the age of 27) into an aggressive one-man fundraising engine that has raised over $800,000 for Parkinson's research.
On the final day, Sunday, February 26, people said their good-byes and returned home armed with new experiences and insights. For some, it was better knowledge of the scientific process and the changes that need to be made to find better therapies. For others, it was renewed passion to treat those whom they serve every day while keeping the patient's perspective in mind. But for all, it was renewed awareness of a common goal to work together to make life with PD better while we strive for the cure.
For more information on the World Parkinson Congress, visit www.worldpdcongress.org.