Motor neurone disease has affected the Churm family for generations, and there is no knowing when the deadly condition will strike next. Now the Churms are fighting back.
Most years, the Churm family celebrates Christmas with a Kris Kringle. Each family member spends $50 or so on a gift for someone else. But last Christmas, things were different.
Instead of buying presents, the Churms contributed $50 each to support research into motor neurone disease at the University of Sydney. Together, they raised $2500 in memory of Greg Churm - car enthusiast, foodie, husband, father and grandpa. He died of the disease just before Christmas, at the age of 67.
Greg was the third member of the family in as many generations to die of a hereditary form of motor neurone disease. His mother, Pamela Churm, lost her life at the age of 60. Her mother, May Jeanne Edwards, also died at 60. Now Greg’s brother, Stephen Churm, 65, has been diagnosed. There is no cure and no knowing when the disease will strike the family next.
In Australia, at least two people are diagnosed with motor neurone disease every day. Symptoms often begin innocuously - cramps, tight muscles, slurred speech - but eventually the muscles weaken and waste away, leaving sufferers paralysed. Only 20 percent of patients survive longer than five years.
Cecil Churm, 93, watched as his first wife Pamela and then his son Greg lost their ability to move, talk, swallow and breathe. He worries about what could happen to his grandchildren and great-grandchildren.
He and his second wife, Patricia, hope that by the time the children are old enough to be at risk, there may be a way to stop, or at least manage, the disease.
That’s why they support research at the University. Cecil has been donating to research into motor neurone disease since 1985 - the year after Pamela’s death.áThe family’s gifts across the decades have come to more than a million dollars.
Cecil spent 33 years as chief librarian at Bankstown Library. He received an OBE in the 1979 for services to libraries and the disabled. He championed accessibility and employment opportunities in libraries for people with disabilities.
Later, he worked in the family business, which supplied books to libraries and schools. "If I got a bonus, I’d add that to the fund," he says. "And if I got a taxation credit, I’d put that in too. We gave what we could, when we could."
With their donations, the Churms have created the Pamela Jeanne Elizabeth Churm Postgraduate Research Scholarship in neuroscience, currently held by Anthony Cutrupi. He is working to discover the gene responsible for a hereditary form of motor neuropathy - a non-fatal form of motor neurone disease that causes wasting, weakness and impaired movement in the calves and feet.
"There are differences in disease progression between the fatal and non-fatal motor neurone diseases," Cutrupi says. "Understanding these differences will help us to identify targets for therapy and intervention at earlier stages of the disease."
He has already identified a DNA structural variation in an Australian family who suffer from distal hereditary motor neuropathy. He hopes that identifying the gene responsible for their condition will shed light on the genetic causes of motor neurone disease, helping to prevent and treat it. "We’re trying to help people in whatever way we can," Cutrupi says.
Whatever the future may hold for the Churm family, Cecil is sure of one thing. "What you can’t do is put your head in the sand," he says. "We’ll continue to support research at the University. By putting a little in, you help move things along."
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