The Silent Genomes Indigenous Rare Disease Diagnosis Steering Committee (S-GIRDD SC) is being established to provide cultural oversight, strategic guidance, and input on decisions related to the creation of the Indigenous Background Variant Library, and its use for Precision Diagnosis in Indigenous children with undiagnosed genetic conditions. It will operate within the SG Project, and as a sustainable tool for diagnosis and related research beyond the Silent Genomes Project.
Susan Dowan is a mother of five and grandmother of one, and is of Cree background from Manitoba. She successfully graduated with a degree in Aboriginal Studies from the University of Toronto in 2004, and has worked with Indigenous Women and children for fifteen years. Currently, Susan is an Indigenous Community Recruiter for Circles For Reconciliation Toronto region, a project whose aim is to establish trusting, meaningful relationships between Indigenous and non-Indigenous peoples as part of the 94 Calls to Action from the Truth and Reconciliation Commission. Susan is also the mother of a son born with a rare genetic condition known as PRUNE1-associated disorder. Her son was recorded as 5th case worldwide. During his diagnostic odyssey, her son experienced numerous hospital admissions at the Hospital for Sick Children in Toronto. He remained undiagnosed until a re-analysis of his Whole Exome Sequencing data revealed his diagnosis. Susan and her family effectively advocated on behalf of her son to find his diagnosis. Her goals were to create understanding of her son's health struggles and medical journey, to open doors to research, and to positively impact future generations of children with undiagnosed rare disorders.
Eduardo Vides is Senior Health Policy Advisor at the Métis National Council. He has worked continuously at different capacities for and with Métis organizations over the last 12 years, on Métis topics such as health governance, social determinants of health, health surveillance, policy and research. Eduardo has assisted Metis leaders in their health sector work and he also has served on several advisory committees and working groups representing the Métis National Office. Eduardo is also an international health consultant, who has collaborated with and worked for various Latin-American organizations including Pan-American Health Organization (WHO/PAHO), governments, Academia and Indigenous organizations and communities. Dr. Vides is an International Graduated Physician. He earned a medical degree from the Autonoma of Guadalajara University (México), a MPH from the University of London (UK) and a MHA from the EAN University (Colombia).
A. Darlene Davis is a band member of the Six Nations of the Grand River. She is wolf clan. She graduated as a Registered Nurse in Hamilton in 1974. She has held many positions over the last 46 years and has been doing community health research for Six Nations Health Services for the past 21.5 years affiliated with McMaster University and the Population Health Research Institute. She has worked in a hospital setting, in a medical clinic, in a public health clinic and currently in White Pines Wellness Centre. Some of her research involvement since March, 1999 includes: The Study of Health Assessment and Risk Evaluation in Aboriginal People with the main paper accepted in the medical journal called The Lancet in 2001. Completed Action to control cardiovascular risk in diabetes, a clinical trial of United States and Canada. Completed Diabetes Reduction Assessment with Medications, Heart Outcomes Prevention Evaluation Study with Medications. Completed the Canadian Alliance for Healthy Hearts and Minds clinical Study involving 8 First Nations across Canada. Completed the Healthy Roots Pilot Study involving “Traditional Foods”, and currently working with the Aboriginal Birth Cohort Study and the Healthy active living for families with young children study. Team member of the Alliance working group and the Silent Genomes Indigenous Background Variant Library steering committee. All for Health.
Joe is the father of Edward who was born with a rare genetic condition known as PRUNE1-associated disorder. Edward was recorded as the fifth case worldwide. During his diagnostic odyssey, Edward experienced numerous hospital admissions at the Hospital for Sick Children in Toronto and Peterborough Regional Health Centre in Peterborough, Ontario. Joe was hopeful that a diagnosis would be found to understand his son's medical journey. After his second birthday Edward remained undiagnosed until a re-analysis of his Whole Exome Sequencing data revealed the diagnosis was PRUNE1-associated disorder.The journey to find a diagnosis for Edward was challenging. Despite the challenges, Joe remains hopeful that the experience with Edward’s journey will facilitate further opportunity for Whole Exome research among Indigenous families of children with undiagnosed disorders. Joe is optimistic that this experience will help future generations of children and parents of children with undiagnosed rare disorders.
Manager, First Nations Research and Knowledge Exchange, First Nations Health Authority
Namaste Marsden, Masemtxoxw, BA, LLB, is from the Wilp Gamlaxyeltxw, Lax Ganeda (Frog Clan). Namaste is a mother to two sons and is from a close knit family from Gitanyow and Gitsegukla on her late father’s side. Namaste has over twenty years of professional experience with Indigenous programs and organizations in health, policy, and research at the local, provincial, and national levels. She is passionate about creating opportunities for collaborative engagement and partnerships, generating knowledge and evidence from western and First Nations world views, mentorship of Indigenous research trainees, community-led Indigenous research, writing and editing, developing opportunities for knowledge to action, and policy and organizational development for the direct benefit of Indigenous peoples and protection of their rights. Areas of interest and research include hereditary and modern governance, spectrum of OCAP® application in First Nations research and ethics, Indigenous knowledge and modern applications, and areas of health including harm reduction, tobacco use, trauma informed care for Elders, and HIV/AIDS. She served as Executive Director, Aboriginal Health Research Networks Secretariat, and Managing Editor, International Journal of Indigenous Health (formerly JAH) – the first following its transfer from the National Aboriginal Health Organization in 2012. She is currently Director of Health Economics and Analytics at the First Nations Health Authority in Vancouver, BC and holds an Adjunct Faculty position with Simon Fraser University Faculty of Health Sciences and is the Co-Chair of the Research Ethics Advisory Council (BC).
Gitxsan Community Member
Lac LaRonge community member
Syexwaliya Ann Whonnock
Elder, Squamish nation
Syexwaliya is a Knowledge Carrier & Elder Advisor from Squamish Nation with strong Indigenous worldviews, ancestral knowledge and traditional teachings, widely respected and acknowledged for her work and energy commitment to her community.