Ronald Hobden has been silenced by MND but is speaking out for sufferers in calling for more funding

A young father, whose battle with motor neurone disease (MND) has cost him his voice, is pushing for increased government funding for people with the debilitating condition.

Ronald Hobden, with wife Anna-Louise Hobden and children Lizzie and Henry, says losing his voice to MND “was one of the hardest things I’ve ever faced”. Picture: Supplied

A young father’s devastating battle with motor neurone disease (MND) is a powerful reminder of the toll the illness takes, not only on those diagnosed, but on their families.

Ronald Hobden, a 35-year-old father from Grafton, was diagnosed with MND in 2023 and given just six months to live.

Now, unable to walk, talk or play with his two children, Mr Hobden’s life has changed beyond recognition.

“Losing my voice was one of the hardest things I’ve ever faced,” he said through a communications device which tracks eye movement.

“Annie, my wife, has had to take on absolutely everything, running our home, raising our children, looking after me ... but I know the toll it takes.“

Ronald Hobden, with his wife Anna-Louise and their two children Lizzie and Henry, is calling for more support for families of MND patients. Photo: Supplied

He has outlived his prognosis, but this victory is tainted somewhat by the anguish he feels over the lack of support for his family, and the 2700 other Australians affected by MND.

Mr Hobden, an ambassador for the National MND Lived Experience Network, is now advocating for increased government funding for both research and essential care, as families like his often face bureaucratic hurdles that delay access to timely support.

“Research takes time, time that people like me don’t have. That’s why care funding is just as critical,” he said.

“It means wheelchairs, communication devices, in-home support, palliative care, everything that helps people with MND live with dignity.”

Motor Neurone Disease South Australia chairman Andrew Dawson echoed this frustration, recalling the complexity of navigating NDIS paperwork while caring for his father, who passed away from MND in 2020.

“People with MND need care now, not after navigating layers of paperwork” Mr Dawson said.

“Everyday, two people are diagnosed and two people die from the disease. Australians are suffering … and they need care and support now.”

Mr Hobden’s rapid decline saw him quickly go from an active dad to dependant on care, highlighting the urgency of a push by MND Australia for a $12 million national data set that will link existing data and evidence to enable research.

“MND takes so much. But funding in research and care gives something back — dignity, joy and hope,” Mr Hobden said.

Originally published as Ronald Hobden has been silenced by MND but is speaking out for sufferers in calling for more funding