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.
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 medical student passionate about ensuring equal access to care for children and families. I take great responsibility in ensuring our microgrant program operates smoothly as well as our other digital technology and web services. I have the privilege in serving on the board and research committee and see this as an important role in helping grow our collaboration of physicians and families affected by rare or undiagnosed diseases.
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.
A passionate father of two children; my oldest having ATR-X (alpha thalassemia x-linked intellectual disability syndrome). I’ve been actively engaged with the Toronto Parent-2-Parent support group since day one and the parent lead since September 2015. I strongly believe in needing to raise our collective voice so that rare diseases get the attention they need and haven’t shied away from speaking publicly whenever the chance has presented itself. As a board member, I welcome the opportunity to lend my voice to our collective goal while strengthening and unifying our voice across Canada.
Scientific Advisory Council
- Dr. Cornelius Boerkoel Chair
- Dr. Barb McGillivray
- Dr. David E.C. Cole
- Jennifer Thompson
- Chloe Lim
Rare Finds Event Chairs
- Alana Newton – Vancouver
- Louise Berezowsky – Edmonton