I’m the mother of two; my oldest has been diagnosed with an 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 be 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.