Maria has been serving as the CEO of WPC Organizational Partner Parkinson's Society and Movement Disorders Society for over a decade. Her key objective was to understand the needs of people with Parkinson’s and their families in India and to design programs to meet these needs within the constraints of the Indian situation. Maria successfully implemented a ‘multidisciplinary model’ through which people with Parkinson’s areeducated, treated, rehabilitated and brought back into the mainstream of society, that is being used in 14 centers across the city of Mumbai and has two centers in the same state of Maharashtra.
Maria's first involvement with the WPC was at the second congress in Glasgow where she presented two poster abstracts.Maria disappointed at the minimalrepresentation of the developing countries. "I strongly felt that a World Congress - buildinga world community- should include andinvolve the developing countries. What was heartening was that an issue raised through aninformal conversation got addressed." Maria joined the Organization & Governments Committee for the WPC 2013 andpresented the Indian perspective at the policy forum at the Congress. She currently sits on the WPC 2016 Organizations Committee.
Maria is most hopeful that the Parkinson’s community coming together at the World Parkinson Congresses provides hope for finding a cure. She explains "eventhough we are culturally different and our socioeconomic conditions are very difficult we can learn fromthe best practices and modify it for the optimum careof our people."
"My greatest learning was from the interaction with people with PD at the formal and informal level and from my observations of their participation at the Congress which truly reflected their effective management of Parkinson’s. Many of these stories I was able to bring back to people with PD and use them as messages of motivation andhope. "
- Maria Barretto
Sara is the President of WPC Organizational Partner Malaysian Parkinson's Disease Association (MPDA) and has been involved in the Malaysian Parkinson's community for almost 20 years, starting when her late father was diagnosed with Parkinson's in 1990. Her role as the President includes providing educational and emotional support services to people with Parkinson's, their caregivers and family members. MPDA was the first Parkinson's Support Group in Malaysia.
Sara's first involvement with the WPC was in 2012, when she was invited to sit on the WPC 2013 Advocacy and Government Relations Committee and continues this role for the WPC 2016. Sara says "it is a privilege to have the opportunity to work with WPC as it is a huge global platform for people living with Parkinson's and their caregivers to meet one another to share experiences and meet scientists, doctors and allied health professionals, researchers and NGOs to find out more about the latest updates and information on Parkinson's Disease and other issues related to Parkinson's."
Sara's ultimate hope for the future is a cure for Parkinson's disease. In the meantime, she hopes that new and improved medication be made more affordable for people living with Parkinson's. She also looks forward to the support and continued partnership with WPC in our Parkinson's work.
"When I was at the WPC 2013 in Montreal, I was amazed at the way people living with Parkinson's were taking charge of their lives, getting involved in social and education activities, advocating for better benefits and healthcare, and volunteerting for clinical trials, etc. At the same time, there was also the presence of health professionals and researchers, scientists, organizations, etc. coming together to share information and working towards a cure."
- Sara Lew
Holly has been working in the Parkinson's community for 15 years as the Executive Director of WPC Organizational Partner Parkinson's Resources of Oregon. "In that time it has been gratifying to watch the growth and availability of support services and specialized medical care throughout the region," she explains. When Holly learned that the WPC 2016 was going to be held in her hometown of Portland, Oregon, she instantly realized the opportunity for her region. "Not only must we work to bring as many local attendees as possible, we also feel a responsibility to be welcoming and gracious hosts as there is so much we have to offer both as a destination and as a resource for people with Parkinson's."
Holly's first involvement with the WPC was as an attendee at the WPC 2013 in Montreal, Canada and was a very impressed with the wealth of accessible knowledge and information. She came away inspired by the passion and determination that exists within the PD community for knowledge, understanding and purpose.
"WPC creates so many opportunities for connection, collaboration and partnership. As we work locally on our preparations, I'm excited by how the shared purpose is also bringing our professional communities together and forging new relationships that will ultimately better serve our community."
- Holly Chaimov
Todd has served as the Chief Executive Officer of WPC Organizational Partner The Michael J. Fox Foundation for Parkinson's Research (MJFF) since May 2011. He also directs MJFF's research strategy toward improved treatments and a cure. Todd explains "our foundation strategizes to overcome field-wide challenges and supports promising research projects that are closest or most critical to practical relevance in patients' daily lives."
The MJFF has supported the Coalition and the World Parkinson Congresses since its inception through sponsorship, involvement on Congress committees and panels on clinical trial recruitment. Todd and his team is looking forward to another rich opportunity to connect with the community at the WPC 2016.
"We know that engagement with the Parkinson's community is one of the best things people with this disease and their loved ones can do: for their health, for the well-being of others, and for the development of improved therapies. WPC provides an opportunity for patients to come together in person to exchange experiences and to learn about their disease and resources that can help them manage their Parkinson's and contribute to research."
- Todd Sherer
WPC friend and past committee member John Silk was diagnosed with Parkinson’s in 2002 and first became involved in Parkinson’s organizations by joining a local Australian support group two years later in 2004.
This led to being a part of Parkinson’s New South Wales (PNSW)—first as acting Secretary and then as President. His wife, Rebecca, joined him on the board of PNSW in 2005.
In his capacity as PNSW President, John joined the board of Parkinson’s Australia. In both these organizations his wife and him have been fortunate enough to initiate some major changes and innovations to benefit people with Parkinson’s in Australia.
After contacting Parkinson's Disease Foundation President Robin Elliott in 2005 to thank him for some materials that PDF had kindly made available to Parkinson’s NSW, Robin, who happened to be Chairing the WPC 2010 Organization and Government Relations Committee invited John to become involved in the planning for the WPC 2010 by serving on his committee. John not only served on that committee for the WPC 2010, he continues to serve on that committee for the WPC 2013.
His current focus is on setting up a lobbying/advocacy division of Parkinson's Australia, based in Canberra. They have high hopes that this direct advocacy will allow their voices to be heard far more clearly by the federal government of Australia. John's work in the community has also been recognized by the Australian Government with a Medal of the Order of Australia (OAM), two Honorary Life Memberships from Parkinson's Australia and PNSW. His wife's work was also recognized with a Honorary Life Membership from PNSW.
When asked about the WPC 2016, John says "I wish all who participate in Portland the best experience possible. I know you will benefit enormously."
The WPC team thanks John for all his hard work in raising Parkinson's awareness and his tireless advocacy work in Australia. John has helped the WPC gain a great following of friends in Australia and his sage advice and years of work with the WPC helped steer some important decisions.