Our Patient Research Partners

What is a Patient Research Partner?

IMAGINE is a research network funded by the Canadian Institutes for Health Research (CIHR) as part of its Strategy for Patient-Oriented Research (SPOR). SPOR’s slogan “Putting patients first” implies that the priorities of patients are most important and should be used to set the research agenda. Research is then being conducted ‘with’ or ‘by’ patients and other relevant stakeholders, rather than ‘for’ them.

IMAGINE’s Patient Research Partners are patient representatives and caregivers from across Canada who provide guidance and direction to the IMAGINE Network and our research. Their involvement ensures the network addresses the unique needs of patients, ultimately improving the quality of life of those living with GI diseases.

Meet IMAGINE's Patient Research Partners:

Patient Representative

Ellen Kuenzig completed her Master’s in epidemiology from the University of Western Ontario in 2012 and her PhD in epidemiology from the University of Calgary in 2016. Combining her experiences living with Crohn’s disease and her passion for better understanding IBD, her research during her PhD focused on genetic and environmental risk factors IBD. After finishing her PhD, Ellen began working as a post-doctoral fellow with Dr. Eric Benchimol at the Children’s Hospital of Eastern Ontario and the Institute for Clinical Evaluative Studies. Ellen received the AbbVie IBD Scholarship from Crohn’s and Colitis Canada and twice received a Student Research Prize from Crohn’s and Colitis Canada at Canadian Digestive Diseases Week. Her fellowship is funded through an award from the Canadian Institutes of Health Research, Crohn’s and Colitis Canada, and the Canadian Association of Gastroenterology.

Patient Representative

Amy van Engelen is a Patient Advisor on the Digestive Health Strategic Care Network in Alberta and is also a PaCER graduate which is the Patient and Community Engagement Research Program through the University of Calgary.  Being able to use her experiences within the medical system as both a patient advocate and researcher have provided incredible insight into the value patients can truly provide. Amy lives in Calgary with her daughter who is attending the University of Calgary. She is a Celiac and Colitis patient.

Patient Representative

Shauna Jones is a busy, full-time working wife and mom of two daughters, one of whom has Crohn’s disease. Her education includes a Bachelor of Arts BA, Bachelor of Journalism (Honours) BJH and Masters in Adult Education M.Ed. She currently work as a Campus Registrar at NSCC, Nova Scotia Community College. Shauna has worked in adult education, including admissions, recruitment and registrarial work for over 25 years. She enjoys running and doing volunteer and advocacy work in health care for the elderly and disabled, as well as for Crohn’s disease. Shauna chose to volunteer with IMAGINE to help support finding the cause and cure for Crohn’s disease.

Patient Representative

Gail is a member of the Patient and Public Advisory Group (P2AG) at Clinical Trials Ontario, the Lived Experience Reference Panel of the Mental Health and Addiction Leadership Advisory Council, and CAMH Constituency Council.  She promotes improved access to mental health services, treatments and research, having spoken at conferences for the Council of Academic Hospitals of Ontario and Ontario Hospital Association, in addition to numerous television and print interviews.

Gail’s passion for helping others, and her goal of translating and disseminating her own knowledge and that of evidenced-based science, concerning the intersection of gut and brain health, was founded in her work in healthcare and research administrative support, as well as her own lived experience as a patient. Being a research participant in clinical trials improved the quality of Gail’s healthcare experience in both the realms of psychiatry and gastroenterology, increased her knowledge of her illnesses, and empowered her to become an active member in her care. Gail is excited to be a part of organizations aiming to transform healthcare and enrich research initiatives through the inclusion of patient engagement and patient partnership.

Patient Representative

Alysia is a public health professional with a Bachelor of Science and Masters of Public Health in Health Promotion. She has worked in schools, workplaces and communities building health and medical programs as well as creating healthy public policy. Alysia currently works in the field of knowledge translation and evaluation for the Alberta Health Services Chronic Disease Prevention unit. Alysia has struggled with digestive issues since she was in her teens and has been diagnosed with IBS. She has found that a diet low in FODMAPs (types of carbohydrates), has alleviated many of her symptoms. Wanting to help others find the same relief, she created a food blog called The Calming Kitchen: Whole Food Recipes for Digestive Health. Alysia will be joining IMAGINE’s Knowledge Translation, Education & Policy working group as a patient representative.

Patient Representative

Sara Blake is a General Counsel for the Ontario Ministry of the Attorney General and is the author of a legal textbook, Administrative Law in Canada – the 6th edition to be published in 2017.

Sara has food intolerances and has lost the ability to digest 95% of the foods that others typically eat. The cause of her symptoms (primarily diarrhea) remains unknown but she’s made significant dietary changes and now, by living on a severely restricted diet with some herbal supplements, has stabilized her gastrointestinal health. She has written a book explaining everything she has figured out: www.foodintolerance.net. The purpose of writing the book was to help other sufferers figure out their own elimination diets and to encourage them share what they have figured out. Sara also hopes to encourage more scientific research into these problems. Except for this gastrointestinal problem, she is a fit and healthy 60 year old. Sarah will be joining the Diet & Environment Scientific Working Group as a patient representative.

Patient Lead

Sandra Zelinsky, is a graduate of the Patient and Community Engagement Research program, University of Calgary and a trainer for the National Strategy for Patient Oriented Research (SPOR) Foundational Curriculum. She is a member of the Canadian Institute for Health Research (CIHR), Strategy for Patient Oriented Research (SPOR) review committee where she uses her expertise in Patient Oriented Research to review SPOR research proposals for grant funding. She is using her research skills to advance Patient Oriented Research and was recognized by the Canadian Patient Safety Institute as a Patient Safety Champion for her work on a PaCER study done on behalf of Alberta Health Services. Her work in research has provided her the opportunity to present at several National and International conferences as well as to chair and/or co-chair at various conferences and meetings. She is currently a Patient Engagement Researcher on 3 studies including the IMAGINE study. It is her experience of living with Crohn’s disease for the past 24 years that inspires and motivates her to work in Patient Oriented Research with the goal of bringing the patient perspective, experience and voice to health research.

Patient Representative

Shawn Reynolds is a Crohn’s disease patient living in Toronto. He’s married and has a two-year old son.  He has a degree in Human Kinetics and was an actor/producer for 10 years, working in TV/film and several theater productions and still dabbles in the industry periodically.

Most recently, Shawn has been spending my time as an entrepreneur.  He created kids’ sports camps which were recently acquired by Nike Sports Camps and is still involved as a leader. He is also the co-owner of family aluminum construction company.

Patient Representative

Sophie LeBlanc is a Grade 11 student at Prince Andrew High School in Dartmouth, NS in the International Baccalaureate (IB) program. Diagnosed with Crohn’s disease at age 8 in 2010, she has a secondary development of arthritis. She has been through the wringer in battling Crohn’s, including many treatment types over the past nine years (she has lost count at about 10 different types of medications and therapies). Currently she is on Stelara and Methotrexate for Crohn’s and Celebrex for arthritis, and has undergone bowel resection surgery. Sophie is determined to live actively, and is captain of her high school volleyball team and also plays competitive club ball. She wants to take an active role in Crohn’s research and has lent herself to a number of research and patient engagement studies and initiatives. She volunteers for the Crohn’s and Colitis foundation, having raised over $3,000 so far through their annual Gutsy Walk. She also is an eager camper at Brigadoon Camp Guts & Glory and participates in their fundraising efforts as well. Sophie aspires to a career in the medical field to help others like her.

Patient Lead

Kim has had Crohn’s Disease for 20 years, having been diagnosed as a pre-teen. She has firsthand experience with many of the complications and challenges patients with Crohn’s disease face. After several particularly troubling years, Kim underwent small bowel surgery. Now in remission, Kim is eager to return to work as a dispatcher at Winnipeg’s 911 emergency centre.

Kim previously volunteered on the Winnipeg Ostomy Association board as well as a few patient advisory boards within Winnipeg’s Health Science Centre. Kim continues to be an active advocate for patients with ostomies and for ostomy awareness, to help end the stigma associated with ostomies. Kim meets with ostomates to alleviate their fears and to educate that there is a life after surgery.

Kim is a dedicated volunteer within her community, as a leader for the local Girl Guides chapter and an executive member of two boards within the community school. Kim enjoys spending time with her husband and two children. She is keen and honoured to be a patient representative on the IMAGINE network.

Adhiyat Najam has been a Type 1 diabetic patient for 17 years. She was diagnosed with the stomach disorder, diabetic gastroparesis, a few years ago as a complication from her underlying diabetes. Since then, she has been inspired to become involved in research through various roles. Adhiyat has a Bachelor of Science degree in Biology from the University of Ottawa and is presently enrolled in the Clinical Research Postgraduate Certificate program at The Michener Institute of Education at UHN. She has worked in the clinical research field for a couple years now. Adhiyat also serves as a Patient Representative for Diabetes Action Canada and is currently involved in a project through the network to develop tools and resources to improve clinical trials through patient-oriented research. Adhiyat Najam has been a Type 1 diabetic patient for 17 years. She was diagnosed with the stomach disorder, diabetic gastroparesis, a few years ago as a complication from her underlying diabetes. Since then, she has been inspired to become involved in research through various roles. Adhiyat has a Bachelor of Science degree in Biology from the University of Ottawa and is presently enrolled in the Clinical Research Postgraduate Certificate program at The Michener Institute of Education at UHN. She has worked in the clinical research field for a couple years now. Adhiyat also serves as a Patient Representative for Diabetes Action Canada and is currently involved in a project through the network to develop tools and resources to improve clinical trials through patient-oriented research.

Kate Mason is a Registered Nurse and yoga teacher currently living in Halifax, Nova Scotia. Kate was diagnosed with Crohn’s Disease over ten years ago while in her first-year university. This experience led her to eventually pursue a career in nursing and to volunteer with Crohn’s and Colitis Canada, founding the inaugural Gutsy Walk in her home region of Muskoka, ON. Recently, her passion for advocacy and connecting with others in the IBD community led to the development of an online narrative and photojournalism project, called the Crohn’s and Colitis Collective. You can learn more about Kate’s journey, and the journey of others living with Crohn’s and Colitis, at: www.crohnsandcolitiscollective.com.

Patient Lead
Patient Lead

Megan Marsiglio is a communications manager, lifestyle blogger and a digestive health advocate based in Toronto. In 2006 Megan began experiencing abnormal digestive issues, which lead to a diagnosis of Crohn’s disease and IBS in 2008 – her first year at university. While she was there she realized there wasn’t any support on campus for students dealing with digestive issues, so she started a support group and launched a blog – www.thegutgazette.com. Creating awareness and advocating for digestive disease understanding became one of Megan’s passions and has lead her to become a patient representative for the IBS studies for IMAGINE.

Perry Steckly loves human behaviour – the good, the bad and especially the ugly.  An extensive policing career fostered his keen interest in people and fueled his consultant company connecting his passion and experience into a variety of services and training programs that have captured the interest of the justice, military and intelligence sectors.  He enjoys exploring what we say and do, and the factors that influence our decisions.

He has been studying and teaching the connections between biology, cognitive psychology, and neuroscience to human behaviour for many years.  And more recently, as the result of his personal health journey, has narrowed his focus toward the gut-brain connection.  He now looks at human behaviour from the inside-out.

Perry’s life-long dependency on daily allergy and asthma medication prompted his research into rehabilitating his microbiome.  He is now medication-free. He champions self-care and promotes being an active participant in creative healthcare solutions.  His inspirational Guts and Glory presentation highlights the influence that sleep, stress, exercise, diet and medication can have on the microbiome, and the subsequent impact on physical and mental health. Perry is an advocate for Public Safety Officers and is committed to exploring innovative solutions that lessen the frequency and effect of Operational Stress Injuries.

Perry is energetic and fun. He is married and the lucky father of three amazing daughters.

Emma Neary is a first-year medical student at Queen’s University and a Queen’s Accelerated Route to Medical School (QuARMS) alumni, as well as a native of St. John’s, Newfoundland and Labrador. Having been diagnosed with IBD in 2014 and psoriatic arthritis in 2017, her first-hand experience as a patient with chronic illnesses has shaped her interests in the fields of medicine and research.

Emma has volunteering experience in Kingston at a student-run soup kitchen and in the Kingston General Hospital. In her hometown, she was an Advanced Medical First Responder with the St. John Ambulance and an executive member of the Memorial University of Newfoundland’s World Health Organization Society.

Currently, she is researching the relationship between opioid receptors and pain signalling in the gut at the Gastrointestinal Diseases Research Unit (GIDRU) in Kingston as a student researcher.

As an aspiring gastroenterologist and clinician scientist, Emma hopes to give back to the IBD community through advocacy for more patient-focused treatments and research.

Sophia Khan considers herself a survivor and warrior of her diagnoses: she lives with Crohn’s disease and neutropenia. Her journey through life has been immensely impacted by Crohn’s. She has experienced the myriad of treatments  used throughout the 1990’s to treat Crohn’s and understands the complexities of living with a chronic illness. Battling for her health has shown her a resilience that even she was surprised to know she possessed. Sophia is a patient advisor within the Digestive Health SCN Committee in Alberta and is pursuing advocacy work with Crohn’s and Colis Canada. Sophia joined IMAGINE with the intention to give back to the healthcare community. Her intention within this sphere of influence is to be a voice that gives honest insight into the patient narrative. It is Sophia’s wish that we work together to build advocacy for IBD patient-related issues that need attention in Canada.