TAMS Directors

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.

Since my diagnosis at 25 years of age with aggressive systemic mastocytosis, I have craved a connection with other people who understand the inconsistencies and challenges of mast cell disease. I believe isolation and lack of support are some of the biggest problems people can encounter with this illness (outside of the actual symptoms). I co-founded TAMS with David Mayne and Claire Ellis to help address this. Outside TAMS, I run my own digital communications and website consulting business, working from home. 

I’m a carer for my husband David who has both cutaneous and systemic mastocytosis. I naturally took on the 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 bring 12 years of experience in correspondence, legislation, and policy in the federal government, including extensive knowledge of the Competition and Consumer Act. I live with a mast cell activation disorder (MCAD) and secondary conditions that slowed and complicated my diagnostic pathway. My professional background, combined with my experience of prolonged uncertainty and conflicting information, has shaped my interest in working with TAMS to support their equitable representation of the interconnected yet diverse MCAD community. I am proud to work with an organisation that places integrity at its centre and develops practical, patient- and family-focused resources grounded in validated data. These resources reduce overwhelm and support informed care goals and patient and family rights to advocate for a meaningful quality of life, as defined by individual goals. My role includes content production and review, coordinating education programs, advocating for improved care pathways and medication access, and coordinating TAMS’ #SpotOurSpots campaign for International Mastocytosis and Mast Cell Diseases Awareness Day (20 Oct).

As someone with strong connections to people living with systemic mastocytosis and MCAS both locally and internationally, I appreciate the critical need for broader community support and awareness for those with MCADs. I have previously been proud to support TAMS through participation in its annual #SpotOurSpots campaign, fundraising, and sharing social media content. As a committee member, I look forward to using my skills and experience in small business and digital content creation to aid TAMS in working towards greater community recognition of MCADs and better support for those living with them.

I run my own welding business and help run a family farm near a small country town in Central Queensland. I became unwell in 2015, in 2017 I was diagnosed with adult onset cutaneous mastocytosis (TMEP). Living a modified life and a good treatment plan has enabled me to get some of my life back after a period of severe illness. I joined the TAMS committee to help spread awareness and give back to a community that has greatly helped me and continues to since 2015. After a break, I am happy to be back on the TAMS Committee.

I joined the TAMS committee after seeking a meaningful opportunity to truly contribute to positive change. Through my connections with TAMS as a member and my communication with its committee, I have seen how essential TAMS’s support is to the mast cell activation disorder (MCADs) community and how committed the organisation is to improving the lives of those with MCADs. Although I am not personally affected by an MCAD, my background in the ACT Government, hospitality, and music and event coordination has seen me develop strong skills in communication, organisation, and community collaboration. I am eager to bring these skills, along with a thoughtful, supportive perspective, while also contributing to strengthening community connection and awareness, including supporting initiatives such as the #SpotOurSpots campaign and annual lighting projects. It is a privilege to serve on the committee and contribute as TAMS continues to grow.