Grandfather inspired by footy idol’s MND courage
After receiving a terminal diagnosis it would have been easy for Graham Johnson to mope. Instead, he will leave something for grandson Hunter to remember him by.
North & North East
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After receiving a devastating diagnosis, Graham Johnson wanted to follow in the footsteps of one of his footy idols and make abig difference.
Mr Johnson, of Munno Para, was diagnosed with the most aggressive form of MND – amyotrophic lateral sclerosis (ALS) – and given between 12 and 24 months to live.
The West Coast Eagles fan knew straight away that he wanted to use his experience to help others.
“I’ve got an enormous amount of respect for (ex-AFL player and coach) Neale Daniher and what he does for MND so I was thinking why can’t I do that myself and why don’t I raise some money,” Mr Johnson, 62, says.
“I know it won’t help me but it might help someone further down the track with a lot more research into it.
“The more money that we can put into research, hopefully it’ll give people a better future and more treatment options.”
Mr Johnson hopes to raise at least $10,000 for MND research and dreams of meeting Mr Daniher or attending the Big Freeze event next year.
“Obviously he’s been diagnosed as well but he’s turned a negative into a positive and I’m trying to do exactly the same thing,” Mr Johnson says.
“I’d love to go to the event at the MCG or even just meet Neale.”
ALS causes constant tremors, muscle weakness and extreme weight loss from muscle atrophy.
There is currently no cure for MND and limited treatment options.
Mr Johnson hopes his fundraising will help others who are diagnosed with the disease in the future.
“It’s my way of turning a negative situation into a positive one,” he says.
“I know in my mind I’m doing something good and it keeps me positive and keeps my mind off what’s going to happen.
“I’ve also offered myself up for any assessments with student neurologists because it’s a very rare disease and they don’t get to see it very often.”
Despite his symptoms, Mr Johnson still tries to run each morning and stay active.
He plans to organise a fun run or walking fundraiser while he still has relatively good health to bring more awareness and funds to MND research.
“I suppose it is a legacy and it’s something I want my grandson to look back on down the track,” Mr Johnson says.
“Unfortunately I probably won’t be here to see him go to school but I want him to know that I did something really good in the last time in my life.”
To donate, visit https://support-fightmnd.everydayhero.com/au/graham-s-fight-with-mnd-1