Dr. Tammie Dewan – Vice Chair
I came to know children with rare diseases as the medical director of the Complex Care Program at BC Children’s Hospital. This program was developed to provide dedicated care for children with the most complex medical needs at BCCH, regardless of diagnosis. More than half of the patients have either rare or undiagnosed conditions. This has led me to an awareness and appreciation for the struggles of families in the face of unknown conditions and trajectories. I am honoured to be affiliated with the RDF as a board member.
Isabel Jordan – Chair
I’m the mother of two; my oldest has been diagnosed with a ultra-rare or unique disorder. I’ve always done a lot of volunteer work at a variety of non-profit groups. I’ve worked as a freelance writer and as an environmental educator. My journey has brought me to being one of the founding members of the Rare Disease Foundation and now I am the Board Chair as well as an avid member of Vancouver Parent 2 Parent Resource Network. I know that together as a community we can make a large impact. Together we can support one another and make the changes necessary to see better treatment and research into rare diseases. This is what keeps me working on this every day. Well at least on the days when I’m not off playing with the kids. Or skiing.
Tyler Jordan – Treasurer
I am one of the co-founders of the Rare Disease Foundation. I’m a board member, the Treasurer, and I sit on the Research Committee.
I have two children; my eldest has been diagnosed with an ultra-rare or unique disorder. I was formerly the President & CEO of Arc’teryx Equipment, a Vancouver company that employs 500 people. I received my undergraduate science degree at Queen’s University in 1992.
Dr. Bill McKellin
I am the father of twins, one of whom has a rare form of dwarfism. I am a founding board member of the Rare Disease Foundation. I am also a medical anthropologist at UBC and interested in the ways that people (parents and clinicians) interpret medical information.
I am a stay at home mom to three amazing sons, aged 9, 7, and 4. My 7-year old son has two rare syndromes, Polymicrogyria (a rare brain malformation) and Weave syndrome (an overgrowth disorder. I first became involved with the Rare Disease Foundation through its Parent2Parent Resource Network meetings. Three years ago I decided to get more involved in the Foundation’s work and help raise awareness. Together with a few close family friends I created a team called Max’s Bombshells to compete in obstacle races and host fundraisers for RDF. I am the National Rare Disease Day Coordinator for RDF and I also participate in various health advocacy projects. I am happy to be a board member and I look forward to the Foundation’s growth and impact!
Dr. Millan Patel – Research Director
I am a clinical assistant professor in the Department of Medical Genetics at the University of British Columbia. I have research experience in Drosophila, mouse and human genetics; my current research focuses on Adams-Oliver syndrome and a virus hunting project in preterm birth and certain birth defects. I am a co-founder and Research Director for the Rare Disease Foundation. I love teaching, thinking of ways to make complex systems more efficient, playing squash and contributing to the growth of this amazing Foundation.
Owen Underhill – Secretary
I am the father of a 14-year old daughter, Alynne, who has 5p- syndrome. 5p- or cri-du-chat is a chromosomal deletion syndrome. Alynne is a delightful child who is non-verbal and non-ambulatory. My wife Wanda and I have two other children, Adrian aged 25 and Sophia aged 22. The experience of raising Alynne has brought us into contact with many new people, and many new organizations. I am pleased to be a Board member of such an innovative and proactive organization as the Rare Disease Foundation. Our goal is to expand our network and be of help to parents and individuals with rare diseases in a variety of ways. In addition to my life with Alynne and Rare Disease Foundation, I am a composer/conductor who teaches at Simon Fraser University in the School for the Contemporary Arts.
I am a recent graduate from UBC’s Integrated Sciences program and have been volunteering with for the Rare Disease Foundation for a few years now. I help maintain some operations aspects of the organization and manage the organization’s technological implementations. Although I am not directly affected by a rare disease, I am pursuing a career in healthcare and hope that this experience can lend the me skills to better the treatment of rare diseases for the future.
I am intimately familiar with the experience of living with a rare disease as both my son and I have Ehlers-Danlos syndrome, a rare genetic connective tissue disorder. My desire to increase awareness and visibility of rare diseases led me to the Rare Disease Foundation. I am honoured to be a board member of this innovative foundation. I am involved in volunteer and donor engagement and fundraising events. With a background in nursing, I am currently a clinical counsellor working with adults with chronic health conditions. I am a passionate advocate, love swimming and hope to soon earn my motorcycle license.
David Cox, CPA, CGA, MBA
David came to the Rare Disease Foundation from the CIHR Canadian HIV Trials Network (CTN) where he was Chief Administrative Officer of a $22.5M non-profit organization working in HIV clinical trials. He has been the financial and operational leader of three organizations, including a medical device company (www.velsope.com) and the CTN (www.hivnet.ubc.ca).
As President and COO of LED Medical Diagnostics Inc., David led the production and sales introduction of VELscope and oversaw distribution to more than 40 countries. In 2008 his team was recognized with the prestigious Red Herring Top 50 Canada award, celebrating the most innovative and promising companies in Canada.
David is a former Director and Marketing Committee Chair with the Community Foundation of Kingston. He prevoiusly volunteered with the Business Advisory Council to the Canadian Junior Football League, and with Operation Rainbow Canada.
Scientific Advisory Council
- Dr. Cornelius Boerkoel Chair
- Dr. Barb McGillivray
- Dr. David E.C. Cole
- Jennifer Thompson
- Dr. Kerstin Mueller
Social Media Coordinator
- Kirsten Bartels
Rare Finds Event Chairs
- Alana Newton – Vancouver
- Stephanie (Steeves) Patel – Edmonton
- Aaron Patel – Edmonton
- Katrina Evanochko – Calgary
- Cara Henry – Calgary