Youth Partners
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My name is Trinity and I am a member of the Youth Advisory Committee at C4T. I am currently a student at the University of Ottawa, studying Nutrition and Food Science and will graduate as a Registered Dietitian in 2024. Living with chronic illness, I bring my experience as a patient to improve outcomes in research. I am excited to partner in research to open up more possibilities for other patients to lead a happy and fulfilling life in spite of pain.
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My name is Zahra and I am a Youth Patient Partner with C4T. I am currently in my undergrad at McMaster University. Having dealt with chronic migraine and other illnesses for several years, I hope my experiences as a patient can help design research projects and improve patient outcomes.
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My name is Melila and I have been a Youth Patient Partner with C4T for three years. I am currently in my last year of my undergraduate degree at Queen’s University, studying kinesiology with a certificate of Disability and Physical Activity. As a partner, I hope to bring insights from my own experiences with chronic pain and migraines to help inform research projects and improve patients’ experiences in research and care. I am proud to be involved in youth and patient engagement practices in clinical research and knowledge translation.
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I am a high school student in Oakville, ON. My sister is a patient diagnosed with Acute Lymphatic childhood leukemia, and I hope by helping out with childhood cancer research I can get more knowledge about childhood cancer while trying my best to help others facing the same challenge.
I play on a provincial and national badminton team. I am the president of our school’s Model UN club. I have deep interests in nursing and want to pursue a career related to becoming a clinical professional. I’m also a Nan-Angel in a non-profit organization named Nankind in terms of helping out families whose parents are currently going through cancer treatments.
Parent Partners
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Isabel was a founding member of the Rare Disease Foundation. Under her leadership, the organization built partnerships between families and researchers through their Microgrant Program. She is the Strategic Lead in Patient Partnerships in the Chambers Lab at Dalhousie University as well as the patient engagement advisor for Solutions for Kids in Pain (SKIP), a knowledge mobilization network that seeks to bridge the gap between treatment practices and evidence-based solutions for children's pain in Canadian health institutions.
Isabel is the mother of a young man living with a rare disease and has drawn on her lived experience in rare disease and disability to become a strong advocate for patient partnership in research. She’s been interviewed on CBC radio, written blog posts on patient engagement, co-authored Patients Included™ charters, is a member of numerous health research committees, and has spoken at national and international conferences about collaborations between researchers and patients.
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Mandy became an ‘accidental’ advocate for safe access to medical cannabis when her son Liam had reached the end of his medical journey with conventional therapies. Liam suffers from Dravet Syndrome, a rare and catastrophic form of epilepsy for which there currently is no cure and treatment options are extremely limited. Over the last 8 years after witnessing the incredible progress that Liam has made since starting cannabis as a treatment for his seizures, Mandy has become a vocal advocate for kids and cannabis; helping other parents navigate the regulations in order to obtain safe access to medical cannabis for their sick kids.
Mandy spoke out against Health Canada’s regulations that required her son to smoke his medication. She was also granted intervener status in the R.v. Smith - Supreme Court Case, where she was able to outline what impact the restrictive regulations of dry form cannabis had on Liam’s life. Mandy has sat on the Patient Advisory Board of Industry Producers and the Cannabis Council of Canada, where she brought a voice for parents and caregivers of pediatric patients suffering from devastating illnesses. Mandy is passionate about patients, especially kids, getting fair access to cannabis as a treatment for their illnesses.
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Antonia entered the world of cancer in 2009 when her two year old son was diagnosed with stage IV high-risk neuroblastoma. Antonia is the co-founder of Advocacy for Canadian Childhood Oncology Research Network (Ac2orn), founder of Neuroblastoma Canada, a member of the Cancer in Young People Canada (CYP-C) steering committee, a research advocate for the St. Baldrick’s-Stand Up to Cancer Phase 2 Pediatric Immunotherapy Dream Team, the pediatric community member for the Ontario Cancer Research Ethics Board (OCREB), the Education Officer of the Parent Advisory Council for the New Approaches to Neuroblastoma Therapy (NANT) consortium, and volunteers for many other cancer focused organizations.
Antonia holds a masters degree in Systems Design Engineering from the University of Waterloo. Antonia lives in Ontario, Canada with her husband Aaron and three beautiful boys, Nate, Alex and Jonathan.
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Co-Founder and Director of Medcan Support, a hub for education, advocacy, research and support in the use of prescribed cannabis in paediatrics. Matt has been involved in the UK Medical Cannabis sector since early 2019 when his son Charlie was prescribed cannabis in the treatment of his severe treatment resistant epilepsy. Charlie has seen a dramatic reduction in seizures and much improved quality of life. Matt continues to campaign and advocate for population wide NHS access for children suffering severe epilepsy and be a voice for patients and families within the growing private cannabis sector joining the executive committee of the UK Cannabis Industry Council.
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Alexander is an entrepreneur, media production artist and communications strategist. His interest in medical cannabis became increasingly important in 2012 when his daughter Gwenevere was diagnosed with intractable epilepsy. He came across cannabis while researching various areas of neuroscience in an effort to understand treatment options. After repeated failures of traditional therapies, he has successfully managed Gwenevere’s seizures with specialized cannabis cultivars, extractions and formulations.
He is regularly asked to speak about his experiences to audiences both within the cannabis patient community and the academic world. He helped found and launch strainprint, an app to help people monitor cannabis efficacy. Later he worked at Flowr, a licensed producer in BC, and is now focusing on assisting research of all forms to advance the evidence based understanding of cannabis treatment. He enjoys fresh ideas and hugs from his children.
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As a registered psychiatric nurse, Tracy has dedicated her career to supporting individuals on their healing journeys from concurrent mental health and substance use disorders. Her clinical practice is enriched with a deep awareness of cultural safety and trauma informed care.
As a parent, Tracy’s journey with the health system began when her son was born premature, and they had a 4 month NICU stay. At 2.5 years old her son was diagnosed with a brain tumour. After her son’s disease progressed and he required chemotherapy, she found herself advocating for medical cannabis, with the objective of maintaining his quality of life through adequate symptom management.
Tracy’s interests naturally align with family-centred care, and she found conversations between health care professionals and parents about medical cannabis can be very challenging for both parties. She joined C4T with hopes that pediatric focused research will provide necessary clinical evidence, thereby giving more families access to cannabis covered by Pharmacare and their extended health benefits.
As an educator, Tracy aspires to integrate her lived experience, compassion, and clinical curiosity to disseminate education to health care professionals and assist in cannabis policy development for pediatric patients. She lives in BC with her husband Jerry, son Llewyn and daughter Kasandra.
Let’s collaborate together
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