Running to make the invisible, visible
Learn moreThank you
Rare Voices Australia
Roy & Carol
Mikala & Pete
Esther
Brooke
Jessica
Harry
John
Belinda
Luke
Josh
Win & Chris
Susan
James
- Swell Design Group
Louisa
Rob & Sharon
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
Roy & Carol
Mikala & Pete
Esther
Brooke
Jessica
Harry
John
Belinda
Luke
Josh
Win & Chris
Susan
James
- Swell Design Group
Louisa
Rob & Sharon
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.
Chapter One ’20
100km in 200 days
Complete
Chapter Two ’21
150km in 200 days
Complete
Our Stories
The Pillbox
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.
Read moreMarch 2, 2022
Interviews
Sanofi Australia’s It’s Possible Youtube Series
For Rare Disease Day our It’s Possible host, Tim, meets with fellow rare disease advocate – also named Tim. Based in Canberra, Tim Fulton shares his inspiring story of being diagnosed with Adult-onset Still’s disease at the age of 22 and how this ultimately lead him to the journey of a lifetime – Running Rare.
Read moreAugust 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.
Read moreSeptember 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
Read moreOctober 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.
Read moreOctober 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
Read moreOctober 6, 2021
Interviews
HerCanberra
HerCanberra, one of Canberra’s most influential media channels shares Running Rare’s story.
Read moreOctober 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
Read moreAugust 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.
Read moreSeptember 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.
Read moreSeptember 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.
Read moreOctober 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.
Read moreSeptember 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.
Read moreAugust 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).
Read moreSeptember 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.
Read moreSeptember 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.
Read moreSeptember 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’.
Read moreSeptember 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’.
Read moreSeptember 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.
Read more