In 2014, disappointed by the lack of a central, NZ-specific MCAD organisation, a handful of us started a Facebook group to bridge the gap. Soon after we began a campaign to bring overseas knowledge to our top doctors and NZ patients. Thus began the “Fight Mast Cell Disease: Lecture Tour 2015. New Insights for New Zealand’s Chronically Ill by World-Class Expert on Mast Cell Disease, Dr Lawrence Afrin.” Dr Afrin’s visit planted a marvellous seed that continues to blossom across our land today. Currently we support patients with mastocytosis, MCAS, Hereditary alpha Tryptasemia and co-morbidities.
In 2015 Co-chairs Cynthia Knight, BSc. and Jo Reid, RN, organised a Charitable Trust (#CC51934) called the Mastocytosis Network of New Zealand as namesake of the late Nancy Gould, R.N. Years before she’d run a small group of the same name. Nancy was a pivotal and vocal advocate within NZ and the International mast cell community until she passed away in 2012. Throughout various name changes (currently New Zealand Foundation for Mast Cell Activation Disorders) our goals have stayed roughly the same: To provide high quality educational opportunities for medical professionals; and health promotion, advocacy and support for patients whilst linking them with knowledgeable mast cell friendly doctors in their region. We also collaborate with New Zealand Rare Disorders and Ehlers-Danlos Syndromes New Zealand. Mast Cell NZ is an inclusive, warm and growing support group strongly emphasising a patient-centred, resource rich organisation. We are hoping to get a web page back up and running soon but in the interim, you can find us on the Facebook page “Mast Cell NZ“.
The current co-chairs for the Foundation are Tania Bray and Michaela Wensley.
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