(UK) was diagnosed with Parkinson's at the young age of 27 and since then has done everything he can to raise funds, heighten awareness and find a cure for the condition which is perceived by many as a condition affecting the elderly alone.
Having completed his highly successful 1,250-mile sponsored walk in 1999, Tom left his job as Director of a London property company in April 2002 to undertake his Coastin' challenge. By April 2003, Tom had walked 4,500 miles around the British coastline, climbed the highest mountains in England, Scotland and Wales and run the Flora London Marathon, raising over £350,000. In 2004 he was runner-up in the GMTV/Daily Mirror Fundraiser of the Year Award and in 2005 he was elected Charity Personality of the Year. A year later he co-founded The Cure Parkinson's Trust, an organization of which he is President and which has since gone on to raise over £5.5 million and has been involved in funding and facilitating ground breaking research in Parkinson's.
Tom was a Board Member of the European Parkinson's Disease Association from 2005 until 2010. He also represents the interests of people with Parkinson's on DeNDRoN (the Dementias and Neurodegenerative Diseases Research Network). Tom acted as the patient representative on the Steering Committee for the World Parkinson Congress 2010 organizational committee and continues in this role for the 2013 Congress. At the 2010 Congress he made nine presentations to a variety of audiences. He is also a leading contributor to the SENSE-PARK project, which is a European funded initiative to establish a more personalized, objective measuring device for people with Parkinson's and those who treat them.
Tom has written a book "Shake Well Before Use" about his walk and his experiences with Parkinson's, which he conveys with passion, optimism and humor. He speaks regularly about his condition and the ability of people with Parkinson's to inject urgency into progressing the delivery of new therapies to the clinic.
Jean Burns (US) is a former web developer and software trainer. She was diagnosed with Parkinson’s disease in 2003 and soon after became an active Parkinson’s advocate. She has received both the Alan Bonander Humanitarian Award and the Milly Kondracke Award for her service to the Parkinson’s community. Jean speaks to college students and community groups about the importance of participating in clinical trials. She herself has participated in the PRECEPT and POSTCEPT clinical trials as well as many other studies. Jean is the co-founder of pdplan4life.com (with Sheryl Jedlinski) with Jean as web developer and graphic designer. She and Sheryl speak at conferences around the US about living well with Parkinson’s. Jean also shares her knowledge of social media and website analytics with other members of the Parkinson’s community.
Patricia Davies (US) has been a professional conference organizer (PCO) for about 35 years. She originally worked in the private sector in London, and before moving to the US in 1991 was managing director of Conference Associates and Services Ltd., a company which specialized in the organization of large international conferences, primarily medical. In 1991 she moved to Washington DC to take up a position with the World Bank Group and the International Monetary Fund as manager of the office which organizes the organizations’ Annual and Spring meetings. She retired from this position in 2007 and was diagnosed with Parkinson’s disease early in 2009.
On the assumption that keeping as active as possible keeps the disease at bay, or at the very least is a distraction, Pat is now involved with many different non profit organizations. Until recently she was Chair of Children of Uganda, which supports several hundred orphans and vulnerable children in Uganda. She is currently helping to organize the Tour of Light, when a group of the children will travel to the US in January/February 2012 for a fundraising tour featuring African song and dance. She is on the board of Georgetown Ministry Center which provides services for homeless people in DC, and she leads a knitting group for the homeless, prepares lunch for them at least once a week, and is organizing a three week winter shelter. With the dog that she adopted to ensure she gets out and walks several times a day, she (and the dog) volunteer at People Animals Love (PAL) in the Reading with Dogs program, designed to help children improve their reading skills. Soon after her diagnosis Pat joined a Parkinson’s Support Group and participated in a couple of clinical studies at UMD. She organized a team to participate in the recent National Parkinson Foundation Moving Day, and the "Movers and Shakers” raised over $8,000. She attended the 2010 WPC in Glasgow and offered her services to assist. She was thrilled to be invited to join the Steering Committee of the 2013 WPC, and is equally delighted to be invited to join the Advocates Committee. She looks forward to working with other members of the Parkinson’s Community, and has a particular interest in resources for individuals who are coping with the disease alone.
Peter Davison (Canada) Peter has celebrated the joy of speaking and the business of making a difference as a professional presenter since 1985. His career began as public school teacher, transitioned to a family violence prevention trainer with the Government of Nova Scotia and, since 2000, as an international motivational speaker working with such diverse audiences as gang member in Los Angeles and emerging leaders in Northern Ireland. His solo adventure lifestyle was humbled by his Parkinson’s and heart condition diagnosis in 2005 at age 45. Running marathons, kayaking oceans and trekking mountains on three continents, including to Everest base camp, became fond memories. After a year of personally experiencing the dark depths that "denial” is not just a river in Egypt, he re-met Andrea, whom he had dated 18 years earlier. Peter surrendered to being lovable and his life began an unbelievable chapter of realizing long forgotten dreams. Married in 2007, selected to adopt a baby girl in 2008, blessed to have a baby boy "the old fashioned way” in 2011, against the biological odds, with his 45 year old wife.
In addition to being a stay at home Dad and motivational speaker, Peter is writing a book called "Gift of the Hit” in which he explores the maxim, ”Life happens, then you get to choose” though sharing the perspective that his diagnosis was one of the best things that has ever happened to him. Peter tries to keep the most important things (kids, career, relationships, service to others) in the foreground of daily life while honoring that Parkinson’s will always be in the background. He is concerned that his voice is starting to be effected and he misses his sense of smell except when changing his baby son’s nappies.
Peter’s Parkinson’s involvement includes hosting a monthly young onset teleconference group. He given thousands of red foam clown noses away while offering his closing keynote, "Four Dimensions of Living Well” to appreciative audiences at seven Parkinson’s conferences across Canada and has recently begun speaking at APDA Chapters in the USA. He and his baby son Vance are a "poster boys” for Parkinson’s Society Canada’s education and fundraising campaign with the key message, "Life goes on after diagnosis!” Peter was honored to attend the second World Parkinson Congress in 2010 in Glasgow and looks forward to helping in the planning of an engaging, inclusive and memorable third WPC in Montreal in 2013.
Robert Gardino (US) The year 2006 will always be for me a bitter reminder of life’s ups and downs. Not only was that the year I was diagnosed in October at age 49 with Parkinson’s, but also the year my mother passed away after a short painful bout with uterine cancer. To boot, the year basically ended with my being hit by a taxicab as I was crossing the street, as a pedestrian, near where I live. As I laid on a gurney in the emergency room of a nearby hospital I remember thinking… "What next?”. Thankfully after the encounter with the cab I was spared further tragic relief for a while anyway. I went through the feeling sorry for myself and oh why is this happening to me phase. But you either decide to spend most of your time wallowing in self-pity or you pick yourself up and decide to get on with your life the best way that you can. I chose the latter. I counted my many blessings and tried to apply myself more diligently to my job, which is working in credit operations at a major US bank.
A lifelong New Yorker I have resided in the same building all my life in the section known as Hell’s Kitchen. A product of the parochial school system of New York City I graduated from Fordham University with a degree in Accounting and later attained my MBA from NYU.
Anyone with Parkinson’s will tell you that it is certainly no fun. Gradually losing the ability to write, tie one’s shoelaces, even losing the simple pleasure of enjoying the smell of freshly brewed coffee are, to put it mildly, frustrating. My attitude is to accept the hand I’ve been dealt and apply positive steps along the way to cope with it. I continue my involvement with my local charity Encore Community Services, part of St. Malachy’s parish, which provides services to the elderly. Now comes my involvement with the World Parkinson Congress via the Parkinson Advocates Committee of which I’m very excited to be a part of. By the time it’s over, I hope my contributions will have lent a hand in helping people with PD realize they are not alone. There are people, organizations, and methods to alleviate the stress of living with Parkinson’s. I want to remind people with PD to maintain a positive outlook for the future as research and clinical trials continue to look for a cure.
Sarah Humphrey (Quebec/Canada) had a fulfilling career in community development. She started one of Montreal’s first parent-run non-profit day care centers in 1972 and then worked for years providing support and training to numerous housing cooperatives and non-profit community housing projects.
She was diagnosed with Parkinson’s in 1996 and is grateful to her cocktail of medications which has allowed her to continue most of the activities she loves, especially cross-country skiing and walking the dog!
Sarah continued working for about ten years and then decided that it was too much. Coming out of her denial phase, she became involved with the Parkinson Society of Greater Montreal as a board member and later as president. Along with a dance therapist, she initiated dance and singing classes for people with Parkinson’s (http://parkinsonenmouvement.com/
). In its 6th year, Parkinson en movement is about to start up a third dance class.
In addition to membership on the Parkinson Advocates Committee, Sarah is also a member of the Local Organizing Committee for the World Congress to be held in Montreal.
Anders M. Leines (Norway) has been a cameraman/editor/producer in television for 22 years, most of them at Norwegian Broadcasting Corporation, working with news, documentaries and short stories. He photographed ”A Journey in the History of Water” (Grand Prix at the 17th Environmental Film Festival and the best-selling Norwegian documentary series to date). For the last six years he has mostly worked with ”Puls”, a popular weekly health and lifestyle program with a strong focus on stories about ordinary people´s challenges. He loves his job and hopes to find one way or another to change the course of my PD. Diagnosed in early 2010, he am still in the early stages of ”I-don´t-know-what”.
He was born in Bergen on the extremely rainy western coast of Norway, and now, 49 years later, lives in Oslo with his lovely Annika and their children Isabel and Leo, age 12 and 10. Annika is from neighboring Sweden and so are his children. (According to their passports.)
He used to take pride in the fact that, for about 10 years he wasn´t on sick leave one single day. That changed around the age of 46. Suddenly the batteries seemed empty and I couldn´t understand it. My only previous experience with Parkinson´s was from when he filmed a patient undergoing brain surgery in the mid- 1990s. He fell into coma during the operation. That was one of the stranger stories among many he worked on. Previously he had been a medical electronics engineer at Siemens, before moving on to study TV production at Hofstra University, New York.
Since diagnosis he has made several videos on PD, among them ”Think BIG ! - how I fight Parkinson´s with LSVT BIG”. This in turn has led Anders to become involved in the activities of the WPC and ”Parkinson´s Movement”, both of them organizations manned with extremely skilled people. Anders believes that together we can make a difference!
Alice Templin (Canada) It was about 10 years ago that I was diagnosed with Parkinson's disease. I'd call it "middle-onset" as I was 50 years old at the time. I was just transitioning into a new career, teaching English as a Second Language, so I had to take stock again. Having worked as a physiotherapist for many years, mostly in the area of neuro rehab, I was familiar with PD on a professional level. The journey of living with Parkinson's now became a personal one - for my husband, my son and myself.
Although I have been fortunate in that the progression has been slow, the decision to keep my professional life mostly at the volunteer level has been a good one for me. I regularly volunteer, and occasionally supply, in an ESL classroom where the multicultural and multi-linguistic environment is stimulating, challenging, and rewarding.
While I feel that Parkinson's does not define who I am, it has definitely provided the context for many of my activities. I have been a Support Group member (we call ourselves the Young and Active group) for many years now. Also, over the past several years, I have been an active volunteer at Parkinson Society Ottawa, as a member of both the Program Committee and the Planning Committee for PSO's annual Perspectives on Parkinson's Symposium. In addition, I have been the lead volunteer in managing the Resource Centre/Library in the PSO office. I have enjoyed perusing research briefs, articles and biographies for the Symposium and reading book synopses for the library, all of which help to keep me aware of what is happening in the world of Parkinson's and keep me hopeful for the future.
A personal highlight for me last year was to walk the 800-kilometer (500-mile) Camino de Santiago with a friend. It was both gratifying and humbling to be able to meet the physical challenge of walking for 40 days along this ancient pilgrimage route in Northern Spain and to raise over $13,000.00 for PSO.
Over the past 10 years so many doors have opened, providing opportunities and challenges encouraging me to do things I never thought I could. So much can be done when we do it in partnership and hope.
Bryn Williams (UK) was diagnosed with Parkinson's disease in September 2007, aged 36. He is actively involved in raising awareness of the condition through his website www.wobblywilliams.com and raising money to fund research seeking a cure. In his spare time he is a Patent Attorney.