This week the odometer clicked over to 175 runs since the Running Rare journey started… and what a journey it has been. Words cannot express my gratitude to you all for the support you have given me over the past three years to keep showing up for the estimated two million Australians living with a rare disease.
Chapter 1 Runs — Chapter 2 Runs — Chapter 3 Runs
Rare Disease Day - the start of a new chapter
February is a special month for the rare disease community as we celebrate Rare Disease Day on the 28th. For the past two years Rare Disease Day has marked the end of a Running Rare chapter, but this year is a little different. It will mark the start of a new chapter. The start of the Hands Across Canberra Running Rare Health Fund. As discussed in my previous letters my hope is that the Running Rare Health Fund will provide Canberran’s with an opportunity to support the local rare disease community by providing a financial vessel to assist rare disease charities and individuals. There is a lot of work ahead, and if you can offer any support or guidance to make this fund as successful as possible, please reach out. I want this to be community led.
I will be providing more specific details in letters to come, but you can learn more about Hands Across Canberra by visiting their website.
Opportunities to Advocate
RareAware, University of Glasgow
At the end of last year a student-led organisation at the University of Glasgow called RareAware reached out to see if I would be interested in participating in a Zoom call to speak with their medical students about life with a rare disease. What an incredible initiative! I am pumped to be a part of a program and to join the students on a call later this month. You can learn more about RareAware by visiting their website and socials
🔗 glasgowunisrc.org/organisation/10166/
🔗 instagram.com/rareawareglasgow/
🔗 facebook.com/profile.php?id=100083060182443
📣 Shout-out: Survivors Teaching Students
I believe these first-hand experience based programs are critical, and I would like to make special mention of a similar program being run by Australia New Zealand Gynaecological Oncology Group called Survivors Teaching Students®. You can learn more about this program by reading Ovarian Cancer advocate Ann Prunty’s story on Running Rare’s website. I am so thankful for Ann and Mike and the continual source of encouragement they are to me.
🔗 anzgog.org.au/sts/
🔗 runningrare.com/stories/anns-story-ovarian-cancer/
Rare Disease Parliamentary Event
I am very grateful for the invitation extended to me by Rare Voices Australia to attend a Rare Disease Day Parliamentary event later this month. This is an incredible opportunity to build connections and advocate for a community I deeply care about.
Rare Disease Day Run
Health permitting, I am hoping to organise a run around Parliament House in Canberra on Rare Disease Day followed by a small BBQ/picnic around 6:30pm. If you’d be interested in attending please let me know in the poll below.
Managing Rare
You might also be interested in my other Substack, Managing Rare. In this newsletter I will focus on what I am learning as a project manager. It is a role I thoroughly enjoy and I’m looking forward to growing and developing my skills this year. I have a lot to learn, so I decided to start this newsletter to help me with my own personal development. I also hope that this newsletter might be helpful to you too!