Ambassadors are members of the Parkinson's community, most of them live with PD, who are passionate about the WPC and believe it's the right format of a meeting to generate the collaborations and momentum needed to find a cure, improve models of care, and make sure the world knows about the WPC 2013. They are leaders in their communities on the ground and online and look forward to welcoming delegates to Montreal in 2013.
Invite an Ambassador to speak to your group about the WPC 2013. They can join you in person or via Skype. WPC Ambassadors have all attended at least one World Parkinson Congress and can give you the details you need and inspire you to make it to Montreal in October 2013. Learn more by writing to firstname.lastname@example.org.
Fulvio Capitanio (Spain) is an economist and ITC manager. He was diagnosed with Parkinson's in 2007 and retired from his job in 2009. In January of 2008, with a group of PD friends he met over the Internet, he started an online organization called "Unidos contra el Parkinson” (together against Parkinson's disease) at http://portal.unidoscontraelparkinson.com.
In October 2009 Fulvio coordinated the group's Second International Meeting in Spain dedicated to promote the importance of complementary therapies in PD treatment. In March 2010 Unidos contra el Parkinson edited a comic "Through the eyes of a child” to help parents to explain PD to their children. In April 2010 started the project "Run 4 PD”, a worldwide event involving cities from different countries to run and walk miles to raise awareness on PD. Fulvio is now dedicated to help and assess young onset people with PD.
Jin Kyoung Choae (South Korea) believed she could control her entire life for 47 years. She married and now has two grown sons. She sometimes asks herself, "Did I forget to thank God because everything seemed easy in life?” She was diagnosed in 2007 with PD and was in a panic and was NOT ready to accept it. But there was no place to hide away from it and without medication she felt she was only a pitiful woman dragging a left leg. She sometimes smiles at the irony now that she wants to grasp her life more than ever since her diagnosis with Parkinson's.
She sees that at the other end a door was open for her when surfing the Internet she found a web page, which attracted her interest. It was about the Parkinson’s Disease Foundation’s Quilt Project which was going to be displayed at the WPC 2010. This inspired her to get involved and she felt that at once she had her own purpose in the PD community. The more stitches she put into her quilt piece, the closer she got to her Parkinson's. She stepped into the WPC world with her quilt square and video entry (took 2nd place). At the WPC, she met many PWP friends, caregivers, medical teams, and patient-centered organizations and she now has a greater confidence in herself. She is now focusing all her thoughts on the Global Parkinson’s Pledge which functions as a great awareness-raising tool of PD in Korea.
Sharon Daborn (Australia) was diagnosed with Parkinson’s in 2002 age 31. With a background in Clinical Trials Studies and Medical Ethics, she began new studies after diagnosis and realized her dream of graduating as an early childhood educator in 2010. Now working part time, she is passionate about strengthening links within the local, national and international early onset community, having assisted in the co-ordination of the first Australian National Young Onset Conference, in November 2010 and the launch of a young onset website. She is currently working on establishing a secure online social support network for the under 40s with Parkinson’s and writing a book to assist others diagnosed at a young age. Sharon lives with her three daughters in Geelong, Australia.
Steve DeWitte (US) was first diagnosed with Parkinson disease in March of 2005 at the age of 48. In October 2006, he established and co-facilitates the Young On Set Support Group of Connecticut. Steve has co-created or hosted programs for the Michael J. Fox Foundation and the American Parkinson Disease Association, and is a 2008 graduate from the inaugural Clinical Resource Learning Institute (CRLI) presented by the Parkinson Disease Foundation (PDF). Steve currently serves as a Connecticut Congressional liaison for the Parkinson Action Network (PAN), and is also a member of the PDF People with Parkinson Action Committee (PPAC). As a full time Parkinson advocate, Steve provides presentations on various issues, most prominently on the subjects of "The Role of the Parkinson Patient”, which emphasizes participation in clinical trials and value of support groups. Steve has participated in over seven clinical trials.
He has used his previous professional experiences to benefit various charities in the areas of volunteer recruitment, marketing, event management, fundraising and strategic planning.
Steve, his wife Teri, and daughter Katie live in Washington, CT.
Bob Kuhn (Canada) is the founding partner of Kuhn LLP, a medium-sized law firm in Vancouver and Abbotsford, British Columbia, Canada. With over 30 years of experience, Bob is passionate about serving clients as a trusted problem solver both inside and outside of the courtroom. He has acted as lead counsel on a number of high profile cases, including appearing at the Supreme Court of Canada. Bob also gives his time to charity work, including serving as chair or director of numerous non-profit entities, as well as writing and speaking. Bob was diagnosed with Parkinson's disease in early 2006 at the age of 53. His father died several years later from complications related to this cruel disease. It is Bob's passionate commitment to live positively despite the challenges. He continues to work full-time in his law practice, write a blog, "Positively Parkinson's" (www.positivelyparkinsons.com) and speaks on that topic whenever possible. He has been married to his wife, Renae, for over 37 years, has 3 grown children and takes great joy in his grandson, PJ. Finally, Bob loves to ride his motorcycle as long and as far as time permit. He has crossed Canada (ocean to ocean) and back in 2008, ridden his 2 wheels to touch the 4 corners of the continental United States in 2009, and traveled all of the Western United States in 2010 and 2011, for a total of over 50,000 km. He is determined, through writing, speaking and just living "out loud", to encourage others battling with Parkinson's disease.
Margarita Makoutonina, MDP , B. Health Sci., OT (Australia) and her daughter migrated to Australia in 1992. With no English but with a background in teaching Margarita obtained a new qualification in OT and a specialization in Movement Disorders. Margarita has over 14 years of clinical and research experience in leading an innovative, evidence based and collaborative multidisciplinary team (MDT). Ms. Makoutonina has been lecturer at the RMIT University and Mayfield Education Institute for 9 years.
Margarita’s achievements include presenting research papers, serving as a faculty member at numerous national and international Congresses, developing and conducting professional specialist training in Parkinson’s nationally and internationally, having several publications in the field of Parkinson’s disease.Margarita has been in a Leadership Health Professionals Group, Movement Disorders Society since 2009. She has been actively involved in the "Health Professionals, Movement Disorder Society” website development.Svetlana, Margarita’s daughter, through her project as a part of MBA assisted her mother in establishing a company ParkiLife Australia Pty Ltd which is specialized in Movement Disorders and management of people with Parkinson’s disease (PD) as well as, providing educational initiatives for Health Professionals, People with Parkinson’s (PwP) and their carers nationally and internationally. As an expert in the field, Margarita assists in establishing specialized multidisciplinary movement disorders programs with evidence based rehabilitation comprehensive approach nationally and internationally.
Ms. Makoutonina has a passion in research, education, and training for health professionals. She has been following her dream in developing certified specialized training as part of undergraduate, postgraduate or short course in Parkinson Disease, establishing educational and training foundation for development of multidisciplinary program in treating Parkinson’s disease.
Tim Oneschkow (Germany)
Sara Riggare (Sweden) was in her early teens in the mid 1980’s when she realized that her body did not always function as others’. She was diagnosed with PD in 2003, at the age of 32 and is living in Stockholm with her husband and daughter. She has been working as a chemical engineer with environmental issues for 14 years but is now a health informatician, using ICT to improve healthcare and medical research. Sara is involved with PD issues both in Sweden and internationally and wants to increase awareness about young-onset PD and is dedicated to patient education and bringing PWP and their families closer to healthcare professionals and researchers.
Israel Robledo (US) was diagnosed with Parkinson's disease in 2007 at age 42. He became involved in advocacy work as a Parkinson's Disease Foundation Research Advocate through their signature Parkinson's Advocate in Research (PAIR) program. His areas of interest include educating the minority community about being actively involved in their health care and advocating for reimbursement of clinical trial-related expenses for participants. Israel is an elementary school reading specialist in Midland, Texas. He is married to Christi and has three daughters Amber, Ashley, Alisha and one grandson, Landon.
Jon Stamford, PhD (UK) is a neuroscientist with a double interest in Parkinson's. As well as leading a research laboratory investigating the neurochemistry of Parkinson's for more than a decade, Dr. Stamford also has young onset Parkinson's disease. He has published three neuroscience books and more than 200 research publications (reviews, papers, abstracts) in an academic career lasting 23 years. He holds an honorary readership at the University of Leicester, and is a scientific consultant and member of the patient advocates group with the Cure Parkinson's Trust. Jon also writes a humorous and influential weekly blog "Slice of Life" about life with young onset Parkinson's.
Yvon Trepanier (Canada) is a retired schoolteacher specializing in languages (French, Spanish, Japanese). Yvon retired after being diagnosed with PD in 2002, at the age of 47. As a young onset person with Parkinson, Yvon has spent time volunteering as a chair of the Victoria Epilepsy and Parkinson Centre and also as a Parkinson Society Canada (PSC) Board member. He recently moved to Southwestern Ontario where he has joined the Parkinson Society Southwest Ontario Board of directors and he has become a support group facilitator. Yvon has a strong understanding of national issues gained by his involvement on regional Boards across the country. He is very involved with advocacy initiatives both provincially and nationally as the chair of PSC advocacy committee. "It's my turn to carry the torch 'till someone else comes along." Yvon served as a director on the PSC Board from 2005 through 2011.
Yvon and his partner moved from Vancouver three years ago to London, Ontario where they own a hosta nursery, they registered and named a new hosta "Stolen Ability" as a fundraiser for PSC.
Ryan Tripp (Canada) was diagnosed with Parkinson ‘s disease in July of 1996, at an age of 47 years old. He worked as a P.E. teacher and administrator for 23 years. Two and a half year’s later he was forced to take a long-term disability health leave from his profession. This lead to a major slip into depression, a fractured marriage and a stage of 'who am I and what is happening to me?!?'
After joining a PD support group, improved medication and some valuable counseling, he found a renewed focus on life and living with Parkinson’s. His active involvement in events and speaking engagements outside of P.S.C. has brought him a wealth of information, contacts and experiences that are extensive and invaluable. Finally, inside P.S.C., he has been a strong consistent fundraiser, an active committee volunteer, an enthusiastic advocate in the community, on Parliament Hill and at Queen’s Park in Canada, plus he started and led a local support group in Muskoka, Ontario. His personal code is to live with intention, walk to the edge, listen hard, practice wellness, play with abandon, laugh, choose, with no regret, continue to learn, appreciate your friends, do what you love, and, live as if this is all there is!