It starts with planting a seed
The Running Rare Health Fund continues to be build momentum
Running Rare Health Fund EOFY Update
There have been times when contemplating the reality of what the rare disease community is facing has left me unsure how to move forward.
There have been moments when I wanted to give up Running Rare — because it all felt too confronting. I thought to myself “What was the point”.
But I’ve come to believe this: small, steady acts of care — offered with intention — can create momentum.
When the Running Rare Health Fund launched in 2022 with Hands Across Canberra, it began as a quiet idea: that while we may not be able to fix everything, we can still do something meaningful.
Three years on, that idea is in motion.
Last financial year, the fund grew from $20,174 to $30,036 — with another $7,250 on its way from the Canberra Day Appeal.
This isn’t just a number on a spreadsheet. It’s evidence that shared community generosity can plant a seed — one that grows into shelter for someone else.
This fund is grounded in a simple first principle: anything above zero compounds.
If supporting this work feels right for you, please consider this an open invitation to walk alongside the rare disease community.
Interview with Tim Fulton of the ‘Running Rare Fund’, our first seed-fund account
Originally published on the Hands Across Canberra website.
In 2022, Tim approached Hands Across Canberra to set up our first seed-fund. A seed-fund is a type of donor-advised fund that allows people to start on a journey towards structured giving with minimal investment and eventually turns into a Named Fund. Hands Across Canberra launched this product in line with it’s inclusive giving ambitions and with the aim of appealing to all demographics. We asked Tim a few questions about his journey.
Why did you establish a Named Fund? And why the Running Rare Fund? And why did you choose Hands Across Canberra?
At the age of 22, I was diagnosed with Adult-Onset Still’s Disease. An ultra-rare inflammatory disorder that affects approximately 1 in 500,000 people. My diagnosis opened my eyes 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. The rarity, and often complexity, of these conditions results in challenges associated with receiving equitable opportunities for diagnosis, treatment and support. Still’s Disease, like many rare diseases, has no dedicated support or advocacy organisation in Australia. In response to this, in 2020, I started the initiative Running Rare with the mission to make the invisible, visible by raising awareness and advocating for the rare disease community as a collective. Around the same time, I had the privilege of connecting with Hands Across Canberra in my professional work. Ever since, I have been inspired by Hands Across Canberra’s heart for our community. In late 2022, I reached out to Hands Across Canberra to see whether we could establish a named fund to support the rare disease community in Canberra.
Why would you encourage others to establish a fund or get involved with Hands Across Canberra?
I believe one of the major barriers to starting anything is both the initial investment and expertise required to build momentum. Partnering with Hands Across Canberra significantly lowers the barrier of entry for individuals and organisations with a heart to support our community financially. Without Hands Across Canberra, having an efficient fundraising mechanism for rare disease charities wouldn’t be possible for Running Rare. I wouldn’t be able to set-up and maintain a giving and financial structure similar to Hands Across Canberra on my own, nor would it be anywhere near as impactful. Furthermore, by collectively concentrating our efforts in supporting Hands Across Canberra everyone receives the benefits of a network committed to our local community.
What value does Hands Across Canberra bring to our region in your opinion?
The greatest value I believe that Hands Across Canberra brings is that it empowers and champions what is already established. Choice can paralyse decision making—especially when there is so much need in our community. Hands Across Canberra unifies our region through its networked approach, removing barriers to both providing and receiving financial support. It is a financial vehicle our community desperately needed, but did not previously have. When investing in Hands Across Canberra, you know that community-service organisations working with our most vulnerable individuals and families will be supported.
