Theme 5 Patient Co-Lead
Sylvain Bédard, lived 20 years with hypertrophic cardiomyopathy before becoming a heart transplant recipient in 2000. Professionally, Mr. Bédard was technical director for musicals, tv shows and international events and a teacher at the National Theatre School of Canada. After receiving the gift of life, he climbed Mont-Blanc (4800m) in 2003 and became the first heart transplant recipient in history to climb over 6000m in Bolivia, Sajama Mountain at 6500m. Gold medalist at the World Transplant Games, he also went on an expedition in the Sahara desert. Motivational speaker: Mr. Bédard has published his journey in the Journal of Heart and Lung Transplantationand has been an invited speaker for the Canadian Cardiovascular Society (CSS), the Canadian Society of Cardiac Surgeons, the Canadian Association of Cardiac Rehabilitation, at the Toronto Heart Summit and many others. His expedition to Bolivia was covered by Radio Canada, the Discovery channel,and Canadian news outlets such as La Presse, the Medical Post, Macleans, the Globe and Mailand Reader's Digest. Mr. Bédard became CNTRP Patient Co-Lead in 2016.
PRPP Patient Lead
Dr. Marie-Chantal Fortin, is a transplant nephrologist at the Centre hospitalier de l’Université de Montréal (CHUM), a researcher at the Research Centre of the CHUM and an associate professor at the Faculty of Medicine of the Université de Montréal. She received her medical degree from the Université de Sherbrooke. She completed her nephrology residency at the Université de Montréal. She has completed a PhD in bioethics in 2008 at the Université de Montréal. She is also a researcher in the Canadian National Transplant Research Program (CNTRP) and the co-leader of the Core 4 (the patient-researcher partnership platform). Her research interests are related to transplantation ethics and patient and researcher partnership in research and clinical care. She chairs the ethics committee of the Canadian Society of Transplantation and is a member of the ethics committee of Transplant Québec, the Royal College of Physicians and Surgeons of Canada, the Canadian Blood Services and the Collège des médecins du Québec. She is also a research scholar of the FRQS.
PRPP Researcher Lead
Laurie Blackstock is an educator and advocate for better understanding of living and deceased organ and tissue donation, and implementation of a national strategy and oversight. She gained firsthand knowledge of the deceased organ and tissue donor process when her husband, Stephen Belliveau, experienced neurological death in January 2017.
Shortly after the one-year anniversary of her husband’s death, Ms. Blackstock volunteered for The Organ Project and joined the National Capital Region Trillium Gift of Life Network (NCRTGLN). In 2018, she helped organize a story-telling workshop and shared her husband’s story on CBC News Morning Live and with MPs in the Parliament Hill Speaker’s Lounge. She was also a witness on behalf of the Kidney Foundation of Canada to the House of Commons Standing Committee on Health (HESA), regarding the role of the federal government in improving Canada’s Organ and Tissue Donation and Transplantation (OTDT) system. She has staffed the NCRTGLN display table at several events, including a national funeral convention and a Yuk Yuk’s comedy competition.
Patient Co-Lead - Theme 1
Don Brinklow - Tyendinaga -First Nations Territory -Ontario
Don is married to Patti Brinklow and a father of eight children. Don became a heart transplant recipient and received his gift of life on Jan/15. Don owes so much to so many as he says " He didn't go through this alone"
Don and his family has spoke at several Trillium engagements and enjoys sharing their story to who ever is willing to listen. It is his way of giving back to so many people that have got him and his family where they are today. The Gift Of A Second Chance !
Don had the privilege of meeting his donor family in Aug/17 thanks social media and has since then were able to speak together to promote TGLN at a conference in October. Don has been apart of the Kingston Transplant Advocate Association (TAA) and is currently a patient partner with the DePaRTT Research Team.
Patient Researcher - Theme 2
Patti Brinklow - Tyendinaga - First Nations Territory -Ontario
Patti is a post Secondary Education counsellor of 28 yrs. Serving First nation students from the community on their journey to higher education. Patti is married to Don Brinklow and a mother of eight children.
Patti has been the major caregiver and support for her husband Don and the entire family. Patti brings a different perspective with her around the affects of organ donation and the emotional impact and dynamics as associated with the experience. Patti has attended several speaking engagements with Don and offers a good insight and support when speaking to recipients and caregivers. Patti had the privilege of meeting her husband Don's donor family in Aug/17. Patti is currently a family patient partner with the DePaRTT Research Team
Family Researcher - Theme 2
My name is Mai Duong. I am your typical girl next door. My life got abruptly interrupted by a cancer diagnosis at 32 years old. I was diagnosed with acute myeloid leukemia while being pregnant with my second child, during a routine blood test in January 2013. A few days following the diagnosis, I had to put an end to my pregnancy in order to start rounds of chemotherapy. I achieved remission, however I relapsed in May 2014. The only chance to survive is to receive a stem cell transplant. While being hospitalised with chemotherapy pumping through my veins, I decided to make a public plea and create an advertising campaign to find my compatible donor. My cancer battle would not only help me but it would benefit others who are searching for their compatible donor. Unfortunately, I did not find my perfect match, however doctors found a cord blood. On October 9 2014, I had my cord blood transplant, I had second chance in life.
Participating at the CNTRP is very important for me since it allows patients to share our points of view and priorities. Collaboration between the scientific community and patients is a vital milestone in order to establish common research priorities.
Theme 3 Patient Researcher
I am Vicky Dabbs, I am a Sister, Nurse, Wife, Mother, Grandma. Born and raised in BC. Eldest of three, with 2 brothers, one of them deceased in 2012 who became an organ donor.
I have had more than 40 years career as a nurse in the operating room. I work for BC Transplant. As an OR nurse attending living related kidney donation. I am also part of the surgical recovery team for deceased donation. I believe strongly in the donation process and have shared our family's story publicly during a nationwide registration campaign on organ donor awareness.
The experience of when one's work and personal life collide is why I believe I could contribute to this project. I too want our transplant recipients to have full lives and this research project looks to the many complex aspects of organ donation and transplantation and have been always very interested in.
Family Researcher - Theme 2
Donna Hart has had a lifelong interest in sports and believes we should make activity part of our everyday life. She is a long standing member of the Milton Masters Swim club and a member of the Oakville Cycling Club since 2011. Sport has always been an integral part of her life.
In December 2014 Donna was diagnosed with heart failure, soon after she was listed for a heart transplant; May 2015, her life was saved when she received a new heart. In August 2016 I she competed in her first Canadian Transplant Games entering in the swimming and cycling events.
Donna has been married for over thirty years and has two adult children. She is a registered social worker with a Bachelor of Arts degree from the University of Waterloo. Her career focused on working with people with disabilities and assisting them to lead productive and fuller lives.
Donna is excited and honoured to be a patient partner with Can-Restore.
Patient Researcher - Theme 5
Sandra Holdsworth received a liver transplant 20 years ago. She is the Ontario Provincial Director of the Canadian Transplant Association. She has been a Volunteer for Trillium Gift of Life Network; (2015 TGLN Community Champion) and founder of Muskoka and Simcoe County Gift of Life Associations. For over 30 years, she worked in the banking industry, however, is now looking to use the knowledge and experience she has gained through personal experience to make a difference in the organ and tissue donation and transplantation fields. She held a contract position with Canadian Blood Services as an Event Coordinator and is a member of the CBS Regional Liaison Committee. She was also a founding member of CanRestore. Sandra has attended every Canadian Transplant Games since their inception in 2000 as well as 6 American and 7 World Transplant Games. She was given the honour of Flag Bearer at the 2011 World Games in Sweden.
It’s a great opportunity to be part of the CNTRP Team and to be able to use the knowledge and experience I have gained through my transplant journey to help others. By collaborating with researchers I am able to help give input into projects as well as it help disseminate the results within my vast transplant community network. It’s important for patients to have a voice in all aspects of their health.
Ms. Kim Jordison works as an Executive Assistant and Privacy Officer to the Chief Executive Officer of Victoria Hospice. Previously, she worked in the provincial government for 22 years and provided managerial support to the executive offices of Treasury Board, Cabinet Operations, the Premier’s Office and many ministry offices.
During the 1996 Blizzard in Victoria, her father passed away from a cardiac arrest. It was during this difficult time that she and her sister discussed organ donation with their mother, and she made it known that her wishes were to be a donor. When her mother suffered a coronary artery blockage, the loss of oxygen caused irreversible damage, and she died at the age of 61. Her mother was able to donate all her organs except for her heart. Seven people were given a second chance at life
Family Researcher - Theme 5
Shilpa Raju is a public health epidemiologist and double lung transplant recipient. She ompleted an Honours BSc in Life Sciences degree at McMaster University, followed by a Master’s in Public Health at Simon Fraser University. She has been working in communicable disease surveillance - for five years provincially, and currently with local public health for over a year.
Her direct experience in the transplant world is as a patient. During her last year of undergrad, she was diagnosed and treated for Hodgkin's lymphoma. While chemotherapy and radiation put her cancer into remission, they also led to the development and progression of pulmonary fibrosis, a known side-effect. She learned to manage and live with the resulting shortness of breath, however the disease slowly worked away at her lungs and eventually she became fully dependant on oxygen. At that point, transplant became her only option. She was listed for transplant in November 2011, and after 4 false calls, she finally received her new lungs on October 29, 2012.
Theme 3 Patient Co-Lead
Heather Talbot is a retired Toronto teacher whose 22 year old son Jonathon was the passenger in a fatal car crash in March 2009. When asked by the doctors at Sunnybrook Hospital if her son had signed his donor card, she did not know. Her daughter Emily said that Jonathon had signed his card and that they had discussed it. Heather's family consented to the donation of Jonathon's kidneys, lungs, liver and heart valves. He saved at least 4 lives. Heather became very involved with organ donation awareness, giving speeches for Trillium Gift of Life Network, hosting an annual table tennis tournament in Jonathon's memory for organ donation awareness, being part of the 2014 Train for Heroes, being in several videos telling Jonathon's story, and attending 4 Transplant Games so far. This has become her purpose in life and is her way of honouring Jonathon's memory.
Being a part of the CNTRP is an extension of my journey. I hope that my experience as a donor mom will help to guide research to improve the rate of donation and ultimately save more lives.
Family Researcher - Theme 2
Nathalie Trudeau - In 2007, Ms. Nathalie Trudeau offered one of her kidney to her colleague and friend who had just learned that she was suffering from terminal kidney failure and that a transplant would be required imminently. The colleague is now living a normal life with her husband and two children.
Ms. Trudeau’s active life is still the same. She promotes organ donation by giving speeches to possible donors with the Canadian Kidney Foundation, giving media interviews, participating in the Nephrology Foundation of the Maisonneuve Rosemont Hospital and participating in the Canadian Transplant games in Vancouver.
Theme 2 Patient Co-Lead
Elaine Yong is a communications professional, currently in charge of media relations at Providence Health Care (St. Paul’s Hospital) in Vancouver. Prior to that, she spent two decades as a reporter, producer and anchor in various television newsrooms across Canada, with her final posting at Global BC, the country’s top local news station. She graduated from the Journalism Program at Ryerson Polytechnic Institute and has since worked in Ottawa, Regina, Calgary and Vancouver. She is especially passionate about raising awareness for organ donation and volunteers much of her free time for the cause. Her daughter, Addison, was the first infant to receive a heart transplant at BC Children’s Hospital in 2011. She and her husband, Global BC reporter Aaron McArthur, are dedicated supporters of transplant research, and launched the Addison Fund (part of the Transplant Research Foundation of BC) in 2013 to focus on pediatric research.
Elaine Yong (and two daughters)
Theme 4 Patient Co-Lead