Chair and Founding MemberAs 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.
Vice Chair, Treasurer, Membership and Founding MemberSince my diagnosis with Aggressive Systemic Mastocytosis at 25 (I am now 40), I have craved connection with other people who understand the inconsistencies and challenges of mast cell disease. I believe that isolation and lack of support are some of the biggest problems people can encounter with this illness (outside of the actual symptoms), and I co-founded TAMS to help address this. Outside of TAMS, I run my own online consulting business from home (which means I get to work in my PJs more often than not, which suits my Masto). I live south of Wollongong with my husband and my fur babies, who provide continual love and support.
Secretary, Public Officer, Conference ChairI’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.
Support Group Chair
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 and have worked continuously as a Clinical Social Worker for the past 39 years. I currently work as a School Counsellor in a Primary School setting. 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’.
Ordinary MemberI 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.
Ordinary MemberI am a Mast Cell Activation Disorder (MCAD) sufferer living in Central Queensland. I am a husband and a stay at home parent to a young son. When I have spare time I enjoy fishing, boating and being near the ocean. I joined TAMS after being diagnosed and realised it’s such a valuable resource for both sufferers and carers. I then joined the TAMS committee at the 2016 Annual General Meeting to help with the running of TAMS and to help raise awareness and support others.
Ordinary MemberI live in Albany, Western Australia, which is located approximately 400km south of Perth. I was diagnosed by biopsy at around the age of 10 years old (I’m now in my 40’s) with Mastocytosis Urticaria Pigmentosa, after spots started to appear on my legs. Over the years more and more spots appeared along with a range of other symptoms. Then in 2010 I was diagnosed with Systemic Mastocytosis. With lots of medications and the support of my specialists in Perth, I live a busy and rewarding life. I am a working mother of three teen/adult children and have four grandchildren. My husband is a FIFO worker, so is often not home to help out. I work as a School Officer in a high school. For a long time growing up, I felt very confused and alone. Since finding TAMS I have not only expanded my knowledge of Mastocytosis but I have also met some amazing people. I joined the TAMS Committee in 2017 as I want to help them to continue to provide the help and ongoing support to others living with this condition. I also would like to share my story and knowledge in the hope that it will help others and raise awareness of this disease to the broader community.