OUR COMMITTEE

As a Management educator and organisational communicator, I believe initiating TAMS was a natural progression since my ‘long haul’ diagnosis. I hope the skills, knowledge and the contacts I have obtained and share will help others find some peace and relief from this wretched and unpredictable disease.

I’m a carer for my husband David who has both Cutaneous and Systemic Mastocytosis. I naturally took on Secretary and Public Officer role when the association was formed as we both share a passion for bringing about positive outcomes for others in similar predicaments in Australia, New Zealand and South East Asia. My dream is to ‘Connect the Dots’ across the globe, bringing specialists together to share knowledge, undertake research and find answers to the many questions that arise from managing ‘temperamental’ mast cells. My other life is as a full-time Early Childhood teacher and hobby farmer on weekends. Life is never dull.

I joined the TAMS Committee at our inaugural conference in Port Macquarie in 2012, and currently, occupy the position of Support Group Chair.  I was diagnosed with Systemic Mastocytosis in 2005, following many years of unexplained illness.  I could not believe my luck when I found out that there was support available in Australia from a newly formed group called TAMS.  I have two adult daughters. I worked as a Clinical Social Worker for the 40 years. My main interests are the performing arts and I am a founding member of a Community Theatre group in Coffs Harbour (1984).  I live with my husband, Jeff, in Coramba village near Coffs Harbour, on the NSW mid-North Coast.  I devote my spare time to our two border collies, Millie and Jess. They are wonderful supports when my world seems totally controlled by the ‘nasty masties’.

I am a Principal of an Autism school in Melbourne. I spend a lot of time working and providing support and professional development to families and mainstream schools. At the age of 36-year-old (I am now 40 years old) I was diagnosed with Systemic Mastocytosis. I do have Urticaria Pigmentosa as well – I do not have a patch on my body without spots. My diagnosis was very straight forward and quick. I am treated through the Royal Melbourne Hospital and have found the treatment and care to be exceptional there. If anyone is having trouble navigating treatment in Melbourne I would be happy to help. While I find having SM very tiring I try my hardest to be positive. Due to my triggers I do have limitations – however instead of focusing on what I cannot do  – I reframe the negative thought and think I cannot do it today. On those days I am very happy to watch Netflix or Hayu.

I was diagnosed with Systemic Mastocytosis (SM) in 2018. Due to comorbidities complicating things, management of my SM is still a work in progress. My journey to diagnosis has highlighted how limited the understanding of Mastocytosis and other Mast Cell diseases is in the broader Australian community. This year I proudly joined the TAMS Committee. I am excited to work on fundraising activities, increasing the understanding of the impacts of all Mast Cell diseases, and what TAMS can do to help those affected through greater community awareness and support.