Two years ago, Tag Rugby ACT co-owner Kevin Miller’s oldest brother Steven started to experience pain in one of his legs.
Over the following months, Steven went to different physiotherapists and doctors until he received a diagnosis in February 2022. It was devastating.
Steven was told he was one of about 2000 Australians with motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS).
The degenerative neurological condition causes nerve cells controlling muscles to die. On average, those diagnosed with MND have just 27 months to live.
There is no known cure for the disease, but some approved treatments may be able to slow its progression.
Since his diagnosis, Steven has lost the ability to use his limbs, requiring him to use a wheelchair and to be fed by others.
“MND is basically a disease that just slowly strips away everything about you,” Kevin said. “Your brain no doubt is still ticking over but you’re essentially just in a shell, which is just horrible.
“I honestly don’t know how my brother keeps going.”
Kevin hosted a tag rugby competition at Lyneham beach volleyball courts in April to raise funds for and awareness about the condition.
About 100 players split between 13 teams from ages 10 through to 60 turned out for the sporting event, which raised roughly $3500.
“The referees that worked for us over the weekend did it for free, they donated their time,” Kevin said. “It’s a good little community that we have around tag rugby and a lot of people really got in and helped.
“Even just things like turning up early, cooking barbecues, and all that volunteering stuff that people do.”
Kevin thanked Volleyball ACT, Enhance Healthcare Canberra and Hairhouse Belconnen for their support.
“We would have liked it to have been a bit bigger and in future years, I think it will,” Kevin said. “But it’s a start and we’ll look to grow it into the future.”
Tag Rugby ACT previously raised around $36,000 for MND research at a 2022 fundraising event supported by the FightMND organisation.
But despite the awareness raised by international campaigns like the ALS ice bucket challenge, and local fundraising events like Kevin’s, there is still sometimes a lack of understanding in the community and in health and disability services, according to MND NSW CEO Graham Opie.
“People are often confused when they’re confronted with somebody with slurred speech or who is unable to walk,” he said. “It’s a series of losses, so eventually you lose your ability to walk and to use your arms to be able to hug your loved ones.
“And eventually often the ability to speak [is lost] and then finally the ability to breathe [is also lost].”
MND NSW provides support to 63 people with the condition across its ACT and southern NSW catchment area.
Mr Opie estimated there were about 45 people living with the condition in the ACT at any given time.
“When a person with MND contacts us, we provide basic education and information about the disease and services,” he said. “We also set them up with an MND advisor who works with the family to get all the support and services into their home.
“From there, they’re either transitioned into the NDIS if they’re under 65 or aged care if they’re 65 and over.”
In cases where people continue living at home, MND NSW also provides supporting equipment at no cost.
Mr Opie said all of these things have to happen very quickly because of the rapid rate of the condition.
He also noted that MND NSW relied on donations and bequests to provide these services.