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Why Advocate?

Why Advocate?

Why advocate you might ask? What is to be gained? And for who? These are important questions. And the answer is not a simple one. But the crux is - that without people taking an active role in performing and undertaking advocacy roles, positive and effective change will not and can not occur.  As Dr Seuss says in, The Lorax; 'unless someone like you cares a whole awful lot, nothing is going to get better. It's not.' In The Lorax, Dr Seuss is in fact talking about our responsibility to care for and look after the environment not health advocacy....

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Podcast: Indispensible - Making Connections

Podcast: Indispensible - Making Connections

Last week I was lucky enough to be invited to discuss chronic illness and rare disease (a very large topic) with Anna, the host of the podcast Indispensible from PharmOnline. Jump on over and have a listen to the episode by CLICKING HERE. It is my hope that though the power of first person storytelling, the ZBs community can increase awareness around this topic, affect some serious change and improve access to treatment and management. As well as ensure more timely diagnosis for people living with chronic, rare or invisible - illness, syndrome or disease is achieved. I spoke about...

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Wrap up of EDS AWARENESS month.

Wrap up of EDS AWARENESS month.

May 2020 was a goodie! Having been EDS awareness month and Zebra Blends (ZBs) launch month and having had both of these events occurring smack bang in the middle of a global pandemic, I really was unsure how things would pan out. But I am calling - SUCCESS. What a heart warming response to the launch of ZBs. All the feels were felt, love, support, encouragement and generally a sense of being cheered on by the small yet formidable community being created across ZBs social media channels. A total of $407.97 was raised, coming directly from sales of products available on the Zebra Blends online...

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The Spoonie Parents Activity Guide - Ways to Survive and Thrive.

The Spoonie Parents Activity Guide - Ways to Survive and Thrive.

What is a 'spoonie parent' you might ask? Well a spoonie person, generally is someone who is navigating and managing a disability, be it a, chronic illness, condition, disease or syndrome on the daily. The spoon theory is used to explain the available mental and / or physical energy a person has in a single day to perform tasks of daily living and / or work, pleasure and hobbies etc. Spoons are used to exemplify how much energy individual tasks or activities require. So lets say a person has 12 spoons to spread out over an entire day before they...

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Being a HIGH RISK person in the current health climate.

Being a HIGH RISK person in the current health climate.

Where to begin. Being considered high risk, brings with it an extra level of detail to all decision making in this time we find ourselves. Our decision making affects our small family unit of four enormously. And the decision making of us all as a collective, affects the wider community, the elderly, other immunocompromised people and people with certain comorbid and chronic illnesses.

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