Life was more than a little unfair when not one, but three members of Cecil Churm's family were diagnosed with the same condition.
An unlucky discovery was a cruel blow to the Connells Point resident. His family was affected by a disease that is both debilitating and difficult - motor neurone disease (MND).
Mr Churm's first wife Pamela was 60 when she died. His son Greg was 67 when he unfortunately died. Now his other son, Stephen, of Como, has also been diagnosed.
Motor neurone disease (MND) occurs when neurones fail to work normally. Muscles gradually weaken and waste, as neurones die. It is a progressive, terminal disease with no cure.
For every person diagnosed with MND it is estimated that a further 14 members of their family will live with the effect of MND forever.
In about 10 per cent of cases of MND in Australia, there is or has been more than one person affected in a family, caused by a gene mutation, which can be passed onto their children (50 per cent chance inheritance). The remaining 90 per cent of people with the condition are the only affected one in their family or are said to have 'sporadic' MND.
"Pamela didn't do any testing. We had no thought of it in those days," Mr Churm said. "When Pamela died, I got all the members of the family tested through the University of Sydney's ANZAC Research Institute. That was the first contact I had with the university. The three boys and my daughter were all tested, but it didn't tell us anything. That's why it was quite a surprise when Greg and then Stephen got it. I didn't think it was going to affect their generation. They've discovered more since then but none of the grandchildren have been tested, as far as I know."
Rather let a sudden fate take over, Mr Churm, at the incredible age of 93, has made it his mission to help others.
He and the other members of his family have spent years donating funds to the University of Sydney for medical research. Their donations have reached a spectacularly impressive amount of more than one million dollars.
Mr Churm, now re-married, has supported the university since 1985 - the year Pamela succumbed to the disease.
His family created the Pamela Jeanne Elizabeth Churm Postgraduate Research Scholarship in neuroscience.
The Christmas after Greg died, in 2018, the family substituted its usual Kris Kringle with everyone giving $50 to research at the university, raising $2500. It was the beginning of a journey of giving.
"If I got a bonus, I'd add that to the fund," Mr Churm said. "If I got a taxation credit, I'd put that in too. We gave what we could, when we could."
The former librarian of 33 years recalls fond memories of bringing home a book for Pamela, that inspired the couple to take the adventure of a lifetime.
"It was a book about the holidays you should have before you die," Mr Churm said.
So, the two of them travelled to Norway, where they explored the Arctic Circle. They admired the pyramids in Egypt.
Decades later when their son, Greg, was diagnosed, he took a similar approach.
"He was like his mother," Mr Churm said. ""He wanted to do all the things he would have done had he lived longer."
In March, the federal government listed a new motor neurone drug on the PBS. Teglutik (riluzole) treats amyotrophic lateral sclerosis, a form of MND. The medicine helps prevent nerve cells being damaged by stopping the release of a chemical messenger in the brain. More than 1300 patients are expected to benefit. Without the subsidy, patients would pay more than $2900 per year for treatment.
The government earlier this year also welcomed news of a medical research breakthrough that could benefit 2000 Australians living with MND. Clinical trials at the Florey Institute of Neuroscience and Mental Health at the University of Melbourne identified that the drug, CuATSM, slows the progression of the disease by 70 per cent.
In Australia, at least two people are diagnosed with MND every day. Only 20 per cent of patients survive longer than five years.
"What you can't do is put your head in the sand," Mr Churm said. "We'll continue to support research at the university. By putting a little in, you help move things along."
