Lived Experience Champions

She makes sense of her pain through science and stories on her blog, MyCuppaJo.com, and was co-founder of the Endless Possibilities Initiative, a nonprofit organization with a mission of empowering people living with pain to live well through experiential learning retreats. Both projects were born of her experiences living with chronic pain after an on-the-job injury as a firefighter.

Her desire to understand her pain led her back to graduate school, where she earned her MSc in human movement and studied pain science. Joletta is now an advocate for advancing the integration of lived experience into the study, research, and treatment of pain. This work led to her positions as co-chair of the Global Alliance of Partners for Pain Advocacy (GAPPA), a task force of the International Association for the Study of Pain (IASP), and as the first Patient and Public Partnerships Editor for the Journal of Orthopaedic and Sports Physical Therapy.

When she's not immersed in patient partnership work, Jo enjoys reading, hiking, camping, snowboarding, nature photography, and spending time with her rescue doggo, Coco.

Tom Hoppe joined the Canadian Armed Forces in 1982 and served with distinction during a career spanning 20 years followed by a career in public safety and security.

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In 1994, while serving in Bosnia, Tom rescued three children who were being shot at by snipers and successfully commanded his patrol during several engagements with opposing forces. In recognition of his conspicuous leadership and bravery under fire the Governor General awarded Tom with both the Meritorious Service Cross and Medal of Bravery. As one of Canada’s decorated soldiers during one tour,

Tom has been the subject of documentary films, media interviews, featured in books, listed in the edition of Canadian Who’s Who, and had a street named in his honour by the City of Calgary.

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Following his military career Tom completed his Business Administration and Human Resources program along with a Master of Arts in Leadership and Training focusing on organizational leadership and coaching transition needs of veterans. Since 1998 Tom has been actively involved in modern day veterans’ issues recognizing the most effective way to assist fellow veterans is by educating government officials on necessary programs and benefits.  To achieve this goal Tom has held numerous positions such as, Past President of a national veterans’ organization, appointed to the Department of National Defence Ombudsman Advisory Committee, past chair of the Veterans Affairs Ombudsman Advisory Committee, and one of the five members for Senator Dallaire’s advisory council.

Tom has been called as an expert witness to testify to both Parliamentary and Senate Committee hearings on veterans’ legislation and benefits.  In 2008 Tom authored a book titled “A Journey of Leadership” and has provided team building and leadership seminars to both the private and public sectors.  

Living in Vancouver, BC, Katelyn is currently a second-year psychology student at Kwantlen Polytechnic University. After completing her undergraduate degree, she plans on pursuing her master’s degree in Social Work, with the ultimate goal of supporting young people with chronic pain and chronic illnesses.

Katelyn’s passion for the improvement of pediatric pain stems from her personal experiences of growing up with complex chronic pain.

Living with intermittent pain for much of her life and dealing with constant pain for over a decade, Katelyn understands how challenging it is to face the physical, psychological, and social effects of pain as a child and adolescent. It was her desire to connect with and support other youth with pain that led Katelyn to becoming a member of the BC Children’s Hospital Youth Advisory Committee and the BC Children’s and Women’s Pain Committee. She has also been involved with the ChildKind certification process at BC Children’s Hospital and has had the opportunity to share her pain experiences and advocate for improved pain care at several regional and provincial pain symposiums and events. It was through her speaking engagements that she connected with Dr. Melanie Noel and her team at the PEAK Research Lab.

Within the field of pediatric pain research, Katelyn’s interests include how chronic pain during childhood and adolescence affects development and how the psychological and social implications of pain follow adolescents into young adulthood; how memories of negative healthcare encounters influence future healthcare utilization in young people with pain; how trauma early in life is linked to chronic pain and illness within individuals and families; and most importantly, how to improve the accessibility of comprehensive pediatric pain care all throughout Canada.

In her free time, Katelyn enjoys roller skating, reading, playing her ukulele, and taking her cat on walks around the neighbourhood.

Jenny Sun grew up in Vancouver and completed her BSc in Anatomy and Cell Biology at McGill University. She was diagnosed with AIS at the age of eleven and has since undergone two spinal fusion surgeries. Her experience with scoliosis has propelled her to pursue a career in the healthcare field as she is currently studying at the Icahn School of Medicine at Mount Sinai.

She is actively involved in the ChildKind project at BC Children’s Hospital where she helps to address the needs of patients and families related to pain assessment and management, promotion of comfort within the points of care, and clinical encounters experienced by patients and families.

As a passion project, she is currently working on identifying the difficulties in healthcare access for individuals with scoliosis across the world.

Jenny collects data and drafts medical literature to help improve the safety and quality of the care that scoliosis patients receive, especially those in disadvantaged communities with limited resources. In her spare time, you can usually find her hiking, reading, and playing with her cat, Mochi. 

Robert was born in Ottawa and moved to the Edmonton area as a child. Shortly after graduating High School, he joined the Military at the age 20 as an Administrative Clerk and than later as a Resource Management Support Clerk.

During his 20 years in the Army, he also served time with the Navy and Airforce. His career took him on 4 overseas deployments to Namibia, Red Sea, NATO and Bosnia. He met, and shortly after, married his lovely wife Christine in 2000, and graciously welcomed her daughter Jessica as his child.

He was transferred in 2002 and moved the family to Edmonton before being medically released in 2005. Rob went to college after his active service, to obtain a Finance Diploma from N.A.I.T. He fully retired from working in 2012, after being employed as a Project Coordinator and Manager of a mechanical company.

At this time in Rob’s life he swiftly changed his life’s purpose and direction to become an Advocate for Veterans.

His knowledge as a Clerk with the Veterans Affairs System navigated his ability to help other veterans with the benefits they well deserved. 

Christine was born in Edmonton and moved to the Comox Valley area on Vancouver Island as young girl. After completing High School, she attended college in Victoria to obtain a Drafting Diploma. A short time after that she moved to the United States where she extended her creative knowledge into Graphic Design.

After quite a number of years Christine returned back to Canada and to the Comox Valley area, along with her precious daughter Jessica.

It was not long before she met Rob and they married in July of 2000. The family was transferred to Edmonton in 2002, and along with Christine’s past experience as Ombudsman from the US forces, once the family was settled in, she now had trouble diving-in to become a Veterans Advocate. She has been a strong supportive and patriotic force along Rob’s side, serving her country in whatever capacity she could, with a great appreciation for her country.

Janice has practiced as a hospital pharmacist for over 35 years and has been a pharmacist in the Ontario Ministry of Health and Long-Term Care (OMHLTC) Paediatric Chronic Pain Program, at Children's Hospital, London Health Sciences Centre for over 4 years. Janice has lived experience with acute and chronic pain beginning in childhood and into adulthood. Janice’s lived experiences have led her to become a patient expert, advocating for patient-oriented research. She is a patient partner in the Chronic Pain Network (CPN) – one of five networks receiving funding through the CIHR’s Strategy for Patient-Oriented Research (SPOR). Janice has been dedicated to promoting awareness of pain, providing education about pain to professionals and the public.

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I am very excited to be part of Dr. Noel’s team! My experiences with pain and my ideas and thoughts are valued, considered and implemented in her research. So wonderful as a pain advocate for many years to be considered an equal member of this research team!

Keith has lived with persistent neuropathic pain for over 35 years following a near-fatal car accident at the age of 16. He has had multiple surgeries and numerous pain management interventions, most of which were unsuccessful until he received a spinal cord stimulator in 2005. After experiencing years of dismissiveness, stigmatization, and disbelief by the healthcare system, Keith focused his energy on persistent pain advocacy. Over the last ten years, Keith’s advocacy efforts have involved being the Vice-Chair for Pain BC, a founding member of the International Association for the Study of Pain’s Global Alliance of Partners for Pain Advocacy, presentations at international pain education conferences, pain education class presentations, guest lectures at universities, and most recently a published researcher. Keith also maintains his Facebook blog, A Path Forward, where he writes about his experiences with living with pain. When not focusing on his advocacy efforts, Keith is a civil engineer technologist and vice president of a heavy civil construction company in Kelowna, BC. He is married to his wife Barb, has one stepson, and an Australian Labradoodle named Parker.

Michelle’s first-born daughter received life-saving surgery from the Hospital for Sick Children in Canada at just 36 hours old. Since that time, she has helped to coordinate the management of her daughter’s care as a long-term medically complex surgical patient. 
 

Michelle is a member of the SickKids Hospital Family Advisory Network and has been involved in a number of patient and family centered care improvement initiatives for the Hospital. She was an invited stakeholder member for Spinal Cord Injury Ontario’s budget submission to improve accessibility and affordability of medical supplies in Ontario and has served on the advisory committee for Ontario’s Project Echo - a guided practice model that increases workforce capacity to provide best-practice specialty care and reduce health disparities.
 

Professionally, Michelle has worked in the music and media industries. After her daughter was born, she transitioned to healthcare working in Medical Education for the Faculty of Medicine’s Department of Paediatrics at the University of Toronto and then subsequently for Janssen Canada.

Born and raised in Toronto, Canada, Gillian Newman currently works within the community as a Social Worker, providing ongoing case management and support, ensuring those she works with have equitable access to care. 

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Gillian’s passion for advocacy, mental health and chronic illness began with her own journey after being diagnosed with Adolescent Idiopathic Scoliosis at the age of 12. Her experience with both bracing and spinal fusion surgery is what inspired Gillian to give back to the scoliosis community by becoming a chapter leader for Curvy Girls, a non-profit organization dedicated to providing support to those suffering from scoliosis around the world. More recently, she has attained a position as a Board Member of Curvy Girls where Gillian has helped establish various initiatives, including a peer mentorship program that provides ongoing guidance for both Curvy Girls members and chapter leaders. Gillian has made it her mission to raise awareness about the emotional and physical impact of scoliosis on those diagnosed with the condition within the medical and lay communities.

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Gillian is a fierce advocate for all those with scoliosis and, more broadly, those suffering from chronic pain and other disabilities. Gillian herself suffers from chronic pain and has dedicated her time to serving as a patient partner on various ongoing research projects in order to further advocate for patients and their lived experiences in the healthcare system.

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In addition, Gillian is a Patient Engagement Research Ambassador with the Institute of Musculoskeletal Health and Arthritis. In this role, Gillian continues her advocacy work, fostering patient engagement to help tell the stories of health care users who are changing the way society treats and understands musculoskeletal health and arthritis.

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Gillian is excited and beyond grateful to continue her work with Dr. Noel and her research team! 

Ryan was inspired by his grandfather, a World War II veteran, to join the military at the age of 16. After over 18 years in the army and two tours overseas, he was medically released. Today he finds purpose in helping other veterans and their family members. Together with his wife and children, he uses his lived experiences to break down the stigma around mental health and chronic pain in the military and veteran community. Through PEAK research projects, he is excited to mobilize change for Canadian veteran families that struggle with chronic pain.

Rebekah grew up in rural Ontario. She met Ryan while they completed their Bachelor’s degrees at Bishop’s University in Lennoxville, Quebec. Following her graduation from the Master’s Public History program at the University of Western Ontario, she continually strives to make connections between being a military family and a public historian. Very proud of her family’s military service and the resilience of their three children, she also recognizes the challenges her family faced after Ryan’s medical release from the military. Becoming a veteran family advocate has been an unexpected but fulfilling role. Rebekah is excited to engage and share in the research and knowledge mobilization, hopeful for positive system changes