TAMS 2020 Research & Education Fundraiser

By The Australasian Mastocytosis Society

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Imagine starting to experience a wide number of strange, varied and unexplained symptoms that could lead to anaphylaxis. You start down a long road to diagnosis and once finally diagnosed, you are told you have a condition with a long name, that means nothing to you?! And the stress of this makes you sicker. There is no cure, only a variety of medications that can help cope with the symptoms. This is the reality for some of people with the rare disease called Mastocytosis. People experiencing this condition, need support, accurate information and medical care.

Where will the funds go?

Hopefully, you will be able to contribute to helping us educate and support both people with Masto, and the treating health and medical practitioners. Many people with Masto are provided with limited correct information especially when trying to adjust to their diagnosis. We seek your help with fundraising and developing these resources to make a real difference to these people’s quality of life.

To celebrate Rare Disease Day, TAMS is launching a 30 day fundraising initiative for the Research and Education Fund. Please share this with as many people as you can, every effort will help to improve everyone’s understanding of this condition.

By contributing you will enable us to make a real difference by:

  • Conducting a survey of people with Mastocytosis within Australia and New Zealand to provide a robust scientific data source for research and education.
  • Developing and distributing training information for Immunology, Haematology, and Dermatology nurses and other allied health professionals. Providing much needed education resources about mast cell disorders, symptoms, treatments, and both professional and patient supports available.
  • Developing a series of online webinars for doctors, GPs, Immunologists, Haematologists, and Allergists who are unfamiliar with Mastocytosis and MCAS. Providing education about detection, diagnosis, treatment and referrals, with the support of a selection of specialists from our medical advisory board.

This will be an invaluable opportunity for our frontline treating doctors to learn from some of the best and to share their own trials, challenges and successes with treatment for patients. Better understanding leads to better treatment and then better health outcomes people with Masto. Join with us and TAMS in making this goal a reality!

A little about The Australasian Mastocytosis Society (TAMS)

TAMS is an organisation that is designed to provide education, awareness, advocacy, support and research for those living with a rare mast cell disease called Mastocytosis, and a related category called Mast Cell Activation Syndrome (MCAS). We are not- for -profit, operating by the efforts of volunteers who either suffer from or care for someone with the condition. Our region extends across Australia and New Zealand, with the goal of extending into Asia. We are connected with our international equivalents across the USA, Canada and the U.K.

In 2020 TAMS is focussing on research to gather up-to-date statistics on the extent of Mastocytosis and mast cell disorders within our community (Australasia) and education of medical professionals to better diagnose and treat these conditions.

But there’s a challenge we face.

Given that TAMS is a not-for-profit organisation, run by volunteers, we have limited funds readily available. We, therefore, rely entirely upon donations to continue to provide support for patients, carers and medical professionals.

The main focus of previous fundraising campaigns has been to raise money for patient education.

Join in from Rare Disease Day

Rare Disease Day is 29 February which is the beginning of our campaign to raise much-needed funds to diversify research and education programs.

Join with us and to help TAMS support both current and future people with mast cell conditions by sharing with as many people as possible.

Every contribution is another step forward in our shared journey to create awareness and to build stronger connections with the doctors and allied health who can help people affected by masto live better lives with unpredictable mast cells.

All donations are tax-deductible.

You can join us

Every dollar you raise will bring us a step closer to realising our goal - to develop a comprehensive research and education program.

Purchase our mascot, the Quoll – also endangered and covered in spots. Like people with Masto, the Quoll has struggled with the effects from the recent bushfires right across Australia. Visit the TAMS website to see these gorgeous mascots - https://mastocytosis.org.au/.

We thank you in advance for your contribution and efforts.

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Team Members

Kristin Sinclair

Heather Mayne