Rare Disease Day: Hundreds gather for annual fundraising event in Cairns

Hundreds of people gathered in a park as they warm up for the Rare Diseases Day fundraising fun run.

n a show of support for those living with rare diseases, hundreds of people gathered in Cairns over the weekend to take part in the annual Rare Disease Fun Run fundraising event.

More than two million Australians are thought to be affected by rare diseases, of which up to 20 per cent are children.

One of those children, Meagan Cross’s daughter, was the catalyst for the annual Cairns event.

“Molly was diagnosed with a rare condition called Angelman syndrome about eight years ago and at the time we felt very isolated, we didn’t understand, we didn’t know where to get support,” Ms Cross said.

“The idea of the day is to get people coming out, meeting people with different rare conditions and building a community around them and their families.”

Aside from fundraising, the event also aimed to raise awareness of rare diseases in Australia and increase society’s understanding of what people living with them go through.

“There’s over 8,000 known rare conditions and they affect between 6 and 10 per cent of the population,” Ms Cross said.

“My vision is to build it up from the kids; if kids grow up and they understand that there are kids who are different to them — they act differently, they might speak differently or not speak — and they start to understand that there are things they don’t really know about.

“That brings it up through the community [because] they start teaching people when they’re adults and that creates a real community of understanding.”

Approximately 800 people registered for the fun run in 2016, four times as many as the inaugural event in 2008.

“To grow, and be consistently growing, in somewhere like Cairns — especially at this time of year when it’s hellishly hot — we’re really proud,” Ms Cross said.

“We’re aiming for bigger and better, if everyone here brought one person, imagine the size of it next year.”

Rare Disease Day is held around the world every year on the last day of February.

Runners and walkers make their way along the Cairns Esplanade during the 2016 Rare Diseases Day fun run in Cairns.
[Source:- abcnet]