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.