Juliette Jones is 14.

Three years ago, she lost her grandfather to motor neurone disease (MND), a condition that causes the death of cells in the spinal cord that control functions including speaking, swallowing and, ultimately, breathing.

In most cases, it is fatal within two to four years of diagnosis.

When her grandfather died, the then 11-year-old started raising funds for research into a cure for the condition.

“I couldn’t believe there was no cure or effective treatment, so I decided I wasn’t going to sit by and do nothing,” Juliette says.

“I started my own business called CSJ leMoNaiD – C for my mum Claudia, S for my grandfather Sam and J is for me, Juliette – selling a range of products made from lemons at my local market.”

In fact, Juliette’s business is so successful she’s presented the Macquarie University’s MND Research Centre with $36,000: a cheque for $33,000 which she promptly topped up, on the spot, with a further $3000.

“It’s been a tough two years working to help save people with MND,” Juliette said at the presentation. “It’s taught me so much about life in general and pretty much changed my whole life.”

In gratefully accepting the donation, Macquarie University neurologist, Professor Dominic Rowe AM described Juliette’s efforts as “herculean.”

“Finding a cure for MND is a marathon, not a sprint,” Professor Rowe said. “People bounce out of bed each day to fix the disease, because it can be fixed. But we can do our work only through the help and enthusiasm of fundraisers like Juliette and leMoNaiD. Indeed, our team can take a lesson from their hope, focus, energy and tenacity.”

Professor Rowe said the University currently is undertaking two world-first trials designed to significantly prolong the survival of MND sufferers, potentially by “thousands of a percent.”

Juliette, who describes the CSJ team as “warriors fighting against a disease that is really scary”, says she wants to stop MND in its tracks through the “#powerofsour”, and plans to continue contributing her business profits to the research.

You can help support the cause by purchasing leMoNaiD at the campus store, library or online, with all profits going to MND research at Macquarie. For those who’d like to taste-test,  there’ll be a pop-up stall by the library on Thursday, May 4 from 10 to 2pm.