When I was diagnosed with a rare disease in my early 20’s my eyes were opened to the difficulties faced by an estimated 2 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 and 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.
I am not a gifted runner. In fact, when I first started Running Rare I was recovering from my second Still’s Disease flare and I could barely manage to run around the block. So attempting to run 100km in 200 days seemed audacious, to say the least. But I knew I needed to get moving again and the concept of using running as a catalyst to raise awareness for the rare disease community continues to propel me to this day. I can’t run remarkable distances, but I can keep showing up. There are lots of things in life we can’t control, but we do get to choose our attitude.
I never imagined that I would complete that initial goal of running 100km in 200 days, but with remarkable support and encouragement, you helped carry me across that finishing line.
This year I set my sights on another audacious goal — developing a platform to share not only my journey but also to share the stories of the rare disease community. That vision has now become a reality and I want to thank you for visiting. Regardless of whether you live with a rare disease, I hope that you might be encouraged and uplifted.
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