My brother Andrew, 12, was diagnosed with Cystinosis in 2005 when he was one years old. my family is from Calgary, Alberta, Canada.
I am involved with the Cystinosis Research Foundation community (USA), C.A.R.E. - Cystinosis Awareness Research Effort (Canada), and aim to become involved with Cystinosis Ireland. I am now living in Dublin, Ireland.
I am passionate about keeping busy up with Cystinosis related research, fundraising for this cause, and building a social support network for Cystinosis patients and their families!