Chief Executive Officer - Syndromes Without a Name
Heather is the Chief Executive Officer and Founder of Syndromes Without a Name (SWAN) – Australia. SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. Heather is the mother two children, one of whom has a rare genetic condition. Heather is a passionate advocate for families who have children with undiagnosed and rare genetic conditions.
Heather is a member of the Melbourne Genomics Health Alliance Community Advisory Group and the Australian Genomics “Genomics in the Community” Working Group. Heather is member of the Consumer and Community Advisory Group for the Discipline of Genetic Counselling, UTS and a board member of Children and Young People Disability Australia (CYDA). She is a moderator for both the FOXP1 and Undiagnosed rareconnect.org communities.
Heather received a Highly Commended in the Service category at the 2017 Premier’s Volunteer Champions Awards. The Melbourne Genomics Community Advisory Group (CAG), which she is an active member won the ‘Outstanding Achievement by a Volunteer – Better Care Victoria Innovation Award’ in the 2017 at the Minister for Health Volunteer Awards. Heather is one of the co-authors on the report “An Ounce of Prevention”, which captured the value of early community engagement and co-design of projects. Heather received a scholarship to the Women’s Board Leadership Mentoring Program for the period 2017/2018.