The HSF Canadian Partnership for Stroke Recovery (CPSR) has established a Stroke Community Advisory Committee of stroke survivors and care partners to vet research, inform clinical trials, liaise with the Knowledge Translation Advisory Committee and provide input on future scientific directions.
“We are putting into practice what other organizations have just started to think about,” says CPSR Executive Director Katie Lafferty. “It is clearly important to include the perspectives of stroke survivors and caregivers and we look forward to being exemplary in how we do that.”
Dr. Dale Corbett, Scientific Director and CEO of the CSPR, said: “We are so fortunate to have this group giving us their time, contributions and helping us to shape our research directions.”
Meet the Stroke Community Advisory Committee:
Scott experienced a stroke in his early 40s that left him with aphasia. Scott is a “super dad” to sons Ben, 12, and Aiden, 10. He is a Scout leader and active volunteer at Sheridan Park Public School in Toronto. Until his stroke, Scott was an IT developer with the Royal Bank of Canada. Along with his wife, Janie Dobie, Scott helped launch the Peel-Halton Young Stroke Survivors group ([email protected]) and continues to be active supporting the Aphasia Institute through the annual Toronto Challenge. Scott and his family enjoy skiing, biking and swimming.
Lori Beaver is from Calgary, and had a career in Aboriginal tourism when she had a stroke in November, 2003. The stroke was caused by a dissection in her carotid artery, and left her paralyzed on her right side along with significant asphasia. She spent 4 months at the Foothills Medical Centre re-learning how to talk, walk, etc. Years later, she returned to be a peer supporter to stroke patients and with the assistance of the Calgary Stroke Program staff, developed the INSPIRES Program (In-patient Support Program in Recovery from Stroke), now with 13 peer supporters. Lori is now employed with the Calgary Stroke Program as a Patient Liaison, Foothills Medical Centre. She has volunteered at a number of Heart & Stroke events, and spoke at the Stroke Congress in Calgary in 2012. Lori still shows the effects of stroke with walking and right hand due to spasticity, and continues to exercise to combat the tightness of her muscles.
When she was 17, Josée chose an unusual path for a woman, studying electronics in college, starting out as an IT technician, and creating in 1999 a consulting firm offering IT services to some leading names in Quebec – Bombardier, Cirque du soleil, Mouvement Desjardins and Banque Nationale. Josée managed the stresses of her busy life by being physically active. In 2011, at the age of 47, she had a stroke while jogging near her home in Ste-Dorothée, a suburb of Montréal. The stroke left her paralysed on the left side. With the help of intensive therapy, she defied the odds and learned to walk again. After a nearly three-year hiatus, Josée, the mother of three young adults, returned to work in March 2014. She coordinates e-commerce projects.
Jane’s husband, Scott, experienced a life-altering stroke in his early 40s that left him with aphasia. Jane worked with Scott to help launch the Peel-Halton Young Stroke Survivors group. She is an advocate for aphasia awareness, an active volunteer and the mother of two young boys. Jane has been employed by the Royal Bank of Canada in various head office roles for more than 25 years.
A senior bureaucrat in the federal public service, Garima Dwivedi suffered a stroke in 2014. The mother of two teenagers, Garima has spoken publicly about the challenges facing people as they recover from stroke. An eloquent speaker, she shared her personal story during the opening remarks of the CPSR’s first Advances in Stroke Recovery meeting.
Para-Snowboard National Team member Andrew Genge is from Oshawa, Ontario — and he has been on the hill ever since age 2. At age 15, he had a traumatic stroke while playing rugby for his high school team. He was tackled and fractured every bone in his face, including three fractures on both sides of his jaw. The fractured jawbone sheered his carotid artery causing him to have a stroke hours after the collision occurred. After 5 months of intense rehab (working with CPSR researchers), he jumped back on his snowboard, and decided to begin competing. His eyes are set on the 2018 Paralympics in PyeongChang.
Carole Laurin survived several strokes at age 42. Half paralyzed and unable to continue in her teaching career, she was motivated to set an example for her two children and relearn to sit and walk again. With the support of family and friends, and more than 400 medical and therapy appointments in the first year alone, Carole overcame hemiplegia. A writer and artist, Carole does volunteer and advocacy work on behalf of stroke survivors and sits as a member of the CPSR’s Knowledge Translation Advisory Committee.
A graduate of the University of Toronto and Oxford University, Hector is the Senior Departmental Historian of the Department of Foreign Affairs Trade and Development of Canada and an Adjunct Research Professor of History at Carleton University. He suffered a major ischemic stroke in August 2008, but prompt action by his family as well as a speedy response from emergency services and excellent treatment (which began within an hour of the stroke) at Kingston General Hospital saved not only his life but also his quality of life. Since then, he has spoken at several conferences and meetings on the subject of stroke treatment from a patient’s perspective.
A proud wife and mother of two teenaged daughters, Nathalie has lived in Ottawa for several decades where she built a successful career as a sales executive, specializing in telecommunications. In March 2013, at age 48, Nathalie suffered a stroke caused by a cervical artery dissection. She diligently continues her rehabilitation to this day.
A stay-at-home mom and entrepreneur, Erin suffered a vertebral arterial dissection while at a playgroup with her daughter in 2013 at the age of 32. She has been involved as an active volunteer and research advocate in the Ottawa stroke recovery community. Erin is still working hard on her recovery and training towards running a 5k this year.
Golfer Andrew Parr is a two-time Ontario amateur champion who attended Texas A&M on a full golf scholarship and won All-American status before he turned pro. At age 24, the London, ON, native had a stroke from which he made a full recovery. Andrew has been an active volunteer in the area of stroke recovery, a passionate spokesman for health research, and he has been widely featured in the media for a 2013 crowd-sourcing campaign to support his training and touring. He is active on social media and produces informative podcasts about health and wellness. www.andrewparr.com
Stephanie had a hemorrhagic stroke in her early 20s while at the University of Waterloo taking Honours Kinesiology degree. She worked diligently at her physio and rehab so that she could go back and finish her degree. Afterwards, she completed a Masters of Health Administration at Telfer School of Management (University of Ottawa). She works at The Ottawa Hospital helping to ensure others get the outstanding care that she received. She is a member of the Stroke Survivors Association of Ottawa where she was formerly a volunteer with the Peer-to-Peer Program. She keeps working on her recovery to this day by going to the gym, taking Zumba classes and volunteering for new treatments/therapies, etc.
Lynne had a major stroke in December 2015 and within an hour and a half of symptom onset — she couldn’t speak or move her right arm or leg — she received endovascular treatment to pull the clot from her brain. Lynne, a practising physiotherapist, made a full recovery. She runs exercise programs for stroke recovery, including a pool-based exercise program since 1984.