Our Patient Research Partners

KT Patient Research Partner

Ellen Keunzig

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.

Amy van Engelen

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.

Pediatrics Patient Research Partner

Shauna Jones

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.

Psychiatry Patient Research Partner

Gail Bellissimo

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.

KT Patient Research Partner

Alysia De Nino

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.

Diet Patient Research Partner

Sara Blake

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 6^th 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.

Co-Lead Patient Engagement

Sandra Zelinsky

Sandra Zelinsky is the Co-Lead with Dr. Deborah Marshall, for the IMAGINE SPOR Patient Engagement Sub-Committee. She has been working as a patient engagement researcher for the past 7 years, is a graduate of the Patient and Community Engagement Research program at the University of Calgary and is passionate about bringing the collective patient voice to health research and healthcare. She is also currently working as the Lead Patient Research Partner for the Alberta SPOR SUPPORT Unit, Patient Engagement Platform and is the Project Lead for the IBD Partnerships project. She has been living with Crohn’s disease for 27 years and it is her lived experience that motivates her to work in patient-oriented research.

Shawn Reynolds

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.

Pediatrics Patient Research Partner

Sophie LeBlanc

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.

Sex and Gender Patient Research Partner

Kim Daley

Kim Daley is a Patient Researcher and Patient Partner in the IBD research community. She has 26 years of lived experience with chronic illness spanning many life stages. After ileostomy surgery, Kim became passionate about increasing ostomy awareness through patient advocacy as a volunteer and board member of the Winnipeg Ostomy Association. As a Patient Researcher, Kim is trained in peer-to-peer qualitative research through the Patient and Community Engagement Research program at the University of Calgary. While an intern in the program, she co-led the study ‘A patient-led, peer to peer qualitative study on the psychosocial relationship between young adults with IBD and food’. The peer-reviewed paper from this research is published in the Health Expectations journal. As a Patient Partner, Kim is engaged in patient-oriented research through the University of Manitoba Chronic Disease Advisory Committee. In 2020 she was the recipient of the MacNaught-Taillon (M&T) Emerging Patient Leader Bursary Award for her contributions to bringing the patient voice to health care and research.

Kate Mason

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.

IBD Patient Research Partner

Anny Fernandez

IBS Patient Research Partner

Megan Marsiglio

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

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

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

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 Colitis 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.

KT Patient Research Partner

Karthika Yogaratnam

Karthika Yogaratnam is a public health professional, with a Master of Public Health in Population Health Sciences. In her current role as a Research Associate with Saint Elizabeth Research Centre, she is actively working on projects that emphasize bridging the gap between system innovation and current practice.

After a long struggle with digestive issues in her late teens, she was formally diagnosed with Crohn’s disease in 2018. The long road to a formal diagnosis sparked her interest in joining IMAGINE, where she wants to help equip those who may be going through similar experiences with the right tools to access the services they need, when they need it. Karthika will be joining the IMAGINE’s Knowledge Translation, Education and Policy working group as a patient representative.

Lisa MacNeil

Based in Nova Scotia, Lisa MacNeil was diagnosed with Crohn’s disease at the age of 10, Lisa and has been on several different treatments over the years including various medications, injections and infusions. Currently Lisa is on Stelara and pays very close attention to her diet as well as practises self-care in the form of stress management, sleep hygiene, and staying active by going to the gym, playing softball and exploring new places in Nova Scotia and beyond.

Lisa completed her degree in public relations at Mount Saint Vincent University in 2011. Over the last five years, she has been working in the co-operative education office at Mount Saint Vincent where she coaches students and works with employers. Lisa also acts as the “Mount Storyteller” on campus where she interviews and writes stories about students, faculty, alumni, and staff members.

Lisa has two other relatives who also have Crohn’s/Colitis and has joined IMAGINE as a way to give back and support a cause that affects both her and her family.

Nadine MacKay

Nadine has over 20 years experience working in environmental and health fields across private, public and non-profit sectors. She has a degree in Environmental Studies from Florida International University in Miami.

Although raised in the United States, she was born in Canada and proudly resides in Nova Scotia. Nadine is currently employed at the Nova Scotia Department of Health and Wellness as a Planning and Development Officer.

Nadine lives with chronic gastrointestinal illness and understands the impact it can have on one’s life and their family. Nadine is keenly interested in how inflammation, immunity, genetics, diet, microbiome and the brain-gut axis influence chronic gastrointestinal illness and strongly supports the research to inform how to best manage these disorders to improve patient’s quality of life.

Nadine looks forward to working as a patient partner to contribute to the IMAGINE Network.

Madge Applin

Madge is a retired nursing leader with extensive experience in nursing education, practice, management, and regulation. Throughout her career that spanned a year less than five decades, Madge has experienced care situations exemplifying collaborative partnerships between patients and providers. Those experiences affirmed for her the outcome benefit of patient as partner and became the catalyst for her pursuit, pre and since retirement, to strengthen the commitment to fostering collaborative partnerships in health care practice, education, research, and management.

Kailey Michiels

Kailey Michiels is a first year science student at Western University in Ontario. She was diagnosed with Crohn’s disease when she was 17 and in her senior year of highschool. Kailey struggled with stomach issues for most of her life; it affected her social life, school, sports, mental health and overall quality of life. Kailey felt that the timing of her diagnosis felt unfair, but as more time passed it gave her life a sense of direction. Many people told Kailey that there was nothing wrong with her for years, and she doesn’t want anyone to feel that kind of helplessness. Since her diagnosis, Kailey has taken a strong interest in IBS and IBD and has made it her goal to become an active participant in ongoing research, both as a patient and a researcher. Kailey is looking forward to getting involved with IMAGINE and learning as much as she can.

Kelly Henderson

Kelly Henderson is a 62-year old from Cold Lake, Alberta. She was diagnosed with Ulcerative Colitis between the ages of 29 and 30 which then changed to a Crohn’s disease diagnosis in her late 40s. Kelly also lives with hypothyroidism, vitiligo and IBS. Her experiences include having a resection that resulted in her an emergency ileostomy and a temporary colostomy bag, plus difficulty at reversal which led to an NG tube and extended hospital stay. Kelly’s current struggle with digestive issues has led her to become involved with IMAGINE as she continues to look for answers that may help her and others.

Michele Maurice

Michele Maurice is originally from Bedford, QC, a little town in the Eastern Townships (about an hour SE of Montreal). She grew up with 2 older sisters in a fully bilingual family. Michele is fluent in French and English and is looking into learning a third language. She learned English at approximately 5 years old when she met her best friend Tammy. Tammy didn’t speak any French and Michele didn’t speak any English, but they managed to understand what the other was saying. Michele has lived in many cities in Canada such as Montreal, Brampton, Mississauga, Ottawa and Calgary. Michele’s career began in reception and admin assistance and then moved onto IT as an IT coordinator, and since 1998, she has been in Human Resources. Michele has always liked to help other people and believes she has selected a career path that now gives her that opportunity.

Jennifer Bennett

My name is Jennifer Bennett and I reside in the beautiful scenic province of Newfoundland. I have been a volunteer with Crohn’s and Colitis Canada for the past 15 years. I was diagnosed with Ulcerative Colitis at the age of 23, shortly after completing my Undergrad Bachelor of Education at Memorial University. As a patient I have undergone many treatments and surgeries in hopes to manage this chronic disease. After completing my Masters Counselling Psychology degree at Memorial University, I became Canadian Certified Counsellor and furthered my studies specializing in Couple and Family Therapy through the University of Calgary. My 17 years experience working with children, adolescents and adults has allowed me to have a strong passion in Cognitive Behavioural Therapy and the gut connection. Further to this, I have an interest in Fecal Microbiota and recently was part of Dr. Neeraj Narula, McMaster Clinical Trial for Fecal Microbiota Transplant (FMT) Study at McMaster University Transplantation for Pouchitis.