Munno Para resident Graham Johnson is raising funds for the MND Association of South Australia,after being diagnosed with terminal motor neuron disease in 2019. PHOTO: Arj Ganesan
ARJ GANESAN
MUNNO Para resident Graham Johnson was diagnosed with terminal motor neuron disease (MND) in 2019, and has begun a new campaign to raise funds and awareness of the illness.
MND is a neurological disease that causes the death of voluntary muscle neurons, and people with MND eventually lose the ability to walk, speak and breathe.
Mr Johnson has one of the most aggressive forms of MND, amyotrophic lateral sclerosis (ALS), and has been given between 12 to 24 months to live.
He said he has severe muscle atrophy, and has lost 14 kilograms over the past few months.
“(It) just eats your muscles away and you get very tired… you get a lot of cramps through your body,” Mr Johnson said.
“I went to a motor neuron disease association Christmas lunch on December 13… so I got to see people at various stages.
“When you get a lot of people in one room that all have it, it’s quite scary and confronting.
“There’s nothing I can do, I’ve just got to enjoy the time I have left and be positive.”
Mr Johnson, a fervent West Coast supporter, was inspired by Neale Daniher – footy legend and former West Coast Eagles general manager – and set out to raise money for MND research.
In 2019, Mr Johnson was able to raise over $14,300 for FIGHT MND – a Victorian not-for-profit organisation.
He has now set his fundraising sights on the Motor Neuron Disease Association of South Australia.
Mr Johnson said the organisation is “absolutely fantastic”.
“They help you out immensely, they get NDIS involved and… offer a support care plan for the next 12 months,” he said.
“I’m going to start fundraising for MND South Australia, because they’re the people that are actually looking after me personally, caring for me and caring for my family.”
Member for Light Tony Piccolo recently met with Mr Johnson to hear his concerns about the alleged lack of funding for MND research.
“Despite the really bad news, Graham has decided to start raising funds to help the research cause,” Mr Piccolo said.
“One of the many pleasures of my job is that you meet some wonderful people, who despite their own personal adversity, are ready to help others in need.”
People wanting to donate can do so at: (https://www.mycause.com.au/page/ 221151/ g r ahamssupport-for-mnd-associationof-south-australia).
