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 2016. They are leaders in their communities on the ground and online and look forward to welcoming delegates to Portland in 2016.
Invite an Ambassador to speak to your group about the WPC 2016. 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 Portland in September 2016. 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. Fulvio was also an ambassador for the WPC 2013.
Jillian Carson (Canada) was diagnosed with Parkinson in 2009 at the age of 49. Her symptoms began after a neck injury with spinal cord damage. Once the neck was fused, she noticed a tremor and cramping in her right arm. Up until this time Jillian led a very active life, which included working as a self employed physiotherapist for 25 years. She knew too well the symptoms of Parkinson and it's devastating effects on those who live with the neurodegenerative disease.
Exercise is her specialty and Jillian was not going to allow her diagnosis to stop promoting exercise and wellness.
Jillian retired from her job in 2011 and trained with Dr. Becky Farley a neuroscientist and physiotherapist. Jillian became a trained Parkinson's Wellness Recovery/Exercise for Brain Change, clinician. She continues to use her physiotherapy skills volunteering and exercising in her local Parkinson community in Victoria BC, Canada. Her emphasis is on living well with Parkinson through Parkinson specific exercises.
Jillian is a Parkinson's Movement Ambassador and is a strong advocate for better quality of life for people living with Parkinson's around the world. Her video, A Physiotherapist's Journey with Parkinson's, was shown at the opening ceremony WPC 2013 in Montreal.
Ruth Coffman (USA) is a 34-year-old married mother of two young boys, Victor who is six years old and Tsadiku who is four years old. She lives in Hood River, Oregon where she is currently working as a Family Nurse Practitioner in a primary care clinic. In addition, she is a full-time doctoral student at Frontier Nursing University as well as a member of the Institute of Functional Medicine where she is studying for her Functional Medicine Certification. Ruth is a long-distance runner and cyclist, as well as a health-food addict. She immensely enjoys hiking, reading, writing, and taking photographs. Her life, in the past year and a half, has changed completely. In September of 2012, Ruth was diagnosed with Parkinson’s disease, however she is not new to living with a chronic condition, as she was diagnosed with Gaucher’s disease at the age of four.
However, being given the diagnosis of Parkinson’s disease threw her into a deep hole filled with utter despair. Ruth explains "My life trajectory, being diagnosed with these two conditions, is grim at best. Despite all of this, with the guidance and support of those that love me, my hope remains indestructible. I have become even more passionate about my life path and I am thoroughly enjoying the journey. Although being diagnosed with this chronic condition is far from a blessing, it has provided me with the opportunity to meet amazing people along the way." Ruth's goal at this time is to provide others with the guidance needed to overcome living a life filled with fear and to inspire other people with Parkinson’s disease to fully cherish the moments that they are living right now. The future has not yet happened and it is completely unknown. In her role as a WPC Ambassador, Ruth will strive to encourage others to take the time to enjoy those things that they love the most and become thoroughly immersed in their life, exactly as it is, right at this moment.
She firmly believes that "you can't do anything about the length of your life, but you can do something about its width and depth-" H.L. Mencken. "In my role as a WPC Ambassador, I feel that I can encourage others living with Parkinson’s disease to do the same. Additionally, I plan to spread awareness about this disease to the public and encourage further research efforts aimed towards discovering better treatments for this potentially debilitating disease. I firmly believe that together we have a better chance of finding more efficacious treatments without the extensive side effect profiles, or even a cure, than we do standing alone."
Andrew Curran (Ireland) was diagnosed with Parkinson’s in June 2008, at the ripe old age of 29. Although he struggled with the effects of this long-term condition, he was adamant that Parkinson’s wasn’t going to affect the life he lived and continued to follow his passion for traveling. In 2010, he spent eight months circumnavigating the world by land and sea. However, having moved to Taiwan in 2011, he was forced to return to Ireland within six months to get help as he found that he couldn’t continue coping with Parkinson’s.
For the first time since his diagnosis, he opened up and spoke to other People with Parkinson’s and found much-needed mutual understanding and support. He became involved with Move4Parkinson’s, an Irish charity that aims to help People with Parkinson’s improve their quality of life. Since then, he has made positive changes in his life by exercising and practicing mindfulness on a regular basis. Realising and feeling the benefits of healthy eating, he has also become passionate about nutrition and the affect that food has on his body. Through his own experiences, he has learned that the self-management of Parkinson’s alongside his medication is a very important part of living with the condition. Today, he follows the motto "Life is what you make of it and not what you let it become”, and hopes to show and encourage others that it is possible to live well with Parkinson’s.
Kevin Krejci (USA) manages market research and business alliances for Fujitsu Laboratories. He is based in San Francisco, where he works closely with technology researchers and startup entrepreneurs in a variety of areas related to ICT (information and communication technologies). He has long been passionate about "open innovation" and Silicon Valley entrepreneurial culture, and connecting the local venture community with Japan. He has a deep belief in the democratization of innovation, and the power of ordinary people and tech working together to have a positive impact on society, health and the environment.
He was diagnosed with PD in 2013, and shortly thereafter joined WPC 2013, a very cathartic and wonderful experience that left him very motivated to work with people and tech to find new ways to optimize life with PD, and find a cure. He is a proud husband and father of two boys, and describes himself as "An impatient PD patient, outsmarting Parkinson's with tech, data, exercise, organic unprocessed food, and positive visualization."
Michael McConnell (USA) is a pharmacist originally from St. Louis, Missouri in the U.S. He worked in both community and hospital pharmacy, and was a successful entrepreneur, but he was employed the longest (20+ years) by a major research and development pharmaceutical manufacturer headquartered in Indianapolis. His career included experience in sales, marketing, market research, finance (long story, don’t ask) ending with the interesting job of Coordinator of Patient Assistance Programs (programs that provided pharmaceuticals free of or at greatly reduced cost, to people who otherwise could not afford them). He retired in 2006 at age 55.
In late 2003, at age 52 Mike noticed a mild but persistent weakness in his left hand and arm. He referred himself to a neurologist. His symptoms were too mild for a firm diagnosis (the Dr actually said, "… you’re too strong to have PD”). But after 6 more months his symptoms progressed to where a second neurologist, confirmed it was Parkinson’s. He thanks his lucky stars to have the love and support of a darling wife of 40 years, and two fine sons (don’t get him started on the four grandchildren, two girls and two boys).
Samuel Ng (Malaysia) is the President and Co- Founder of the Perak Parkinson’s Association (PPA) – a voluntary organization established in 2012 by a group of Person with Parkinson’s, their caregivers, family members and friends.
Samuel‘s on-going personal battle with Parkinson’s since he was 42 (in 2007), which resulted and up-to- date help, healing, hope and a healthy attitude to face the disease with pride and perseverance. Part of his pursuit involves traveling far and wide to share his experience and to gain expertise in Parkinson’s Disease.
Dilys Parker (New Zealand) was diagnosed with Parkinson's in May 2008. Early in 2007, Dilys with her husband John left her home and adult children in New Zealand and set off on an adventure to Europe. She and John established a new life in the UK and lived and worked in London. Diagnosed barely a year later Dilys' travels and socializing now took on a different focus and included meeting others with Parkinson's from around Britain and Europe.
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. Sara was also an Ambassador for the WPC 2013.
Israel Robledo (USA) 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. Israel was also an Ambassador for the WPC 2013.
Allison Smith (USA) was 32 years old when she was diagnosed with Parkinson’s disease. After three years of hiding the symptoms of her illness, she decided to undergo deep brain stimulation surgery. With the support of her medical team, she has decided to take this challenge and give back to patients who struggle with neurological deficiencies. In 2010, Allison launched a program called "Parkinson’s in Balance” which offers fitness classes, support groups and community events at no cost. Allison holds a Master’s degree in Marital and Family Therapy with an emphasis on Health and Fitness. She is a clinical member of the California Association of Marriage and Family Therapists (CAMFT). Allison is a personal trainer certified through National Academy of Sports Medicine (NASM), holding certifications in Sports Performance and Corrective exercise. Allison is also the author of "I am not Contagious” which documents her life with a chronic illness and has a online blog, "The PerkyParkie”.
Ryan Tripp (USA) 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! Ryan was also an Ambassador for the WPC 2013.