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Running to make the invisible, visible

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Thank you
  • Rare Voices Australia
  • Jessica
  • Harry
  • Mikala & Pete
  • Belinda
  • Luke
  • Win & Chris
  • Susan
  • James
  • Swell Design Group
  • Louisa
  • Rob
  • Alex
  • Neale
  • Leo
  • Sarah
  • Isaac
  • Es
  • Shaun
  • Selena
  • Steve Waugh Foundation
  • Charlize
  • Sal & Roo
  • Sharon
  • Daniel
  • Jason
  • Marg
  • Ben & Emily
  • Christine
  • Tim
  • Ann & Mike
  • Woden Valley Alliance
  • Rare Voices Australia
  • Jessica
  • Harry
  • Mikala & Pete
  • Belinda
  • Luke
  • Win & Chris
  • Susan
  • James
  • Swell Design Group
  • Louisa
  • Rob
  • Alex
  • Neale
  • Leo
  • Sarah
  • Isaac
  • Es
  • Shaun
  • Selena
  • Steve Waugh Foundation
  • Charlize
  • Sal & Roo
  • Sharon
  • Daniel
  • Jason
  • Marg
  • Ben & Emily
  • Christine
  • Tim
  • Ann & Mike
  • Woden Valley Alliance

When I was diagnosed with a rare disease in my early 20’s my eyes were opened to the difficulties faced by an estimated two million Australians living with a rare disease. It became apparent that although our diseases are rare, we’re facing similar challenges.

In 2018, the Australian Government commissioned Rare Voices Australia, the peak body for Australian’s living with a rare disease, with the task to collaboratively develop a National Strategic Action Plan for Rare Diseases.

In 2020 the Action Plan was released. A few months later I began Running Rare — a personal challenge inspired by a desire to play a part in advocating for the rare disease community during this critical implementation period.

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Chapter One ’20

100km in 200 days

Complete

Chapter Two ’21

150km in 200 days

83% Complete

Our Stories

My story is just one of many

Ann’s Story

Ovarian Cancer

I was diagnosed with Ovarian Cancer at 64, and I had absolutely no symptoms, and no, not even in hindsight.

Justine’s Story

Dystonia

A week after my fall, I noticed my left leg was dragging. My pace went from sub eight minute miles to 11 minute miles. I tore a hole in my left shoe. I had only put about 20 miles on them. It felt like I was dragging my leg behind me.

Tim’s Story

Adult Onset Still’s Disease

Tim formally diagnosed with Adult-onset Still’s disease (Still’s disease) in 2016 at the age of 22. Still’s disease is a rare systemic, auto-inflammatory condition that affects between one in 100,000 to one in 1,000,000 people globally.

Angus’ Story

Beta-Propeller Protein-Associated Neurodegeneration

I have a rare condition known as BPAN – Beta-Propeller Protein-Associated Neurodegeneration. BPAN damages the nervous system and gradually worsens over time. This means I have difficulty with fine motor skills such as walking.

The Pillbox

Things I don’t want to forget

December 8, 2021

Thoughts

A night to forget, a hockey Knight to remember

From a hospital bed to a dream night come true… and everything that happened in between.

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August 31, 2021

Organisations

Steve Waugh Foundation

The Steve Waugh Foundation supports children and young adults 0-25 years living with Rare Diseases. As the only Foundation of its kind in Australia, the Steve Waugh Foundation is dedicated to being ‘somewhere to turn’ for children and young adults living with the rarest conditions, who can often feel isolated.

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September 25, 2021

Organisations

Parliamentary Friends of Australians Living with Rare Diseases

Federal Ministers Dr Mike Freelander MP & Trent Zimmerman MP discuss their involvement with the Parliamentary Friends of Australians Living with Rare Diseases

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October 18, 2021

Organisations

The Australia New Zealand Gynaecological Oncology Group

ANZGOG is the peak, national gynaecological cancer clinical trials organisation for Australia and New Zealand. They also run Survivors Teaching Students®, a ground-breaking volunteer program that brings ovarian and other gynaecological cancer survivors and caregivers into the classrooms of medical, nursing, and health professional students to share their experiences of symptoms, diagnosis and treatment, and provide key information on the diseases.

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October 13, 2021

Inspiration

100km for Flora, a personal journal for Cameron Dyson-Smith

We are not alone, every year, around 110,000 Australians have a miscarriage. 2,200 more endure the pain of stillbirth, 600 lose their baby in the first 28 days after birth and many more face the grief of termination for medical reasons

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October 6, 2021

Interviews

HerCanberra

HerCanberra, one of Canberra’s most influential media channels shares Running Rare’s story.

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October 6, 2021

Interviews

WIN Television

Very privileged to share why I started Running Rare with WIN television in the lead up to Rare Disease Day 2021

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August 20, 2021

Inspiration

Running for resilience

A few months ago I was walking around the lake on a Wednesday night when I noticed people gathering in running gear at the Foreshore. I thought maybe this was some sort of event or fundraiser and I continued walking. The next Wednesday I was out walking again, and behold, people were again gathering at the Foreshore.

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September 4, 2021

Thoughts

Choose to press on

For many months I found it difficult to write. I was struggling with overwhelming feelings, lacking the spark of hope I so desperately wanted to share with you all. This, I felt, was reason not to write.

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September 4, 2021

Thoughts

Disease Patterns, Chronic Fatigue and the Spoon Theory

One of the first questions I want to address is disease patterns. From the literature I have reviewed it seems that there are three typical patterns.

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October 17, 2021

Interviews

Sharing my story with the Advocate

The 27 year old is pushing through the pain barrier to raise awareness of not only Still’s disease, but all forms of rare diseases ahead of International Rare Diseases Day on Sunday, 28 February.

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September 1, 2021

Thoughts

What type of wake do you leave?

Often we are not aware of the impact or influence that our lives and attitudes have on other people’s lives – this is something that became profoundly obvious to me through my meeting with these two women. It reinforced to me that our attitudes matter even if we don’t think anyone is looking.

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August 30, 2021

Thoughts

We are the normals

Yesterday I had my sixth infusion at the hospital, I sat in chair number 13 (which is more often than not the chair I get allocated because no-body else seems to like to sit in it, but it doesn’t bother me).

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September 1, 2021

Thoughts

Sometimes we need to look back

Over the past two and half months I have been learning to be grateful for the present. To be thankful for where I am and not becoming fixated on constantly improving myself and obtaining things that I perceive will give me worth and value in the eyes of the people around me.

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September 1, 2021

Thoughts

When doors close, new ones open

I was reading a few days ago about how peripheral vision is significantly more critical to decoding our environment than our central focus.  It hit me tonight just how applicable this is to our attitude towards situations too.

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September 1, 2021

Thoughts

Just stop, and slow down

That evening I had two responses to choose from. I could lose it and become a fountain of unmerited accusations. Alternatively, I could slow down and give the situation the ‘benefit of the doubt’.

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September 1, 2021

Thoughts

Take me seriously, the cry of the chronically ill

I have been reading a lot of articles, forums and blogs on chronic and invisibles illnesses the past couple of months. A reoccurring theme throughout this literature is the common struggle that people living with invisible illnesses have; feeling that their severe health condition is not taken seriously and that others think they are a ‘phony’.

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September 4, 2021

Thoughts

Life’s unpredictable, and maybe that is okay?

Life will throw curve balls and present mountains that seem too high to climb, but persist persist persist.

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