By Natasha Fujimoto
IT’s the kind of epiphany no one should have to experience, but when Jane Spencer began noticing a series of unusual physical symptoms toward the end of 2022, she couldn’t shake the thought: “Oh no, I’ve got Motor Neurone Disease.”
Jane was no stranger to MND. She had lived with its shadow since losing her mother, Bev, to the disease in 1990, followed by her cousin Kerry in 2010. Then, in June 2023, after a series of tests and an agonising wait, Jane received the devastating diagnosis of MND herself.
Despite her family history and her initial tests, which revealed significant muscle nerve function loss, her neurologist was hesitant to give a definitive diagnosis. Feeling like time was slipping away, Jane sought a second opinion from Calvary MND Vic, where she was diagnosed with SOD1-type MND, a rare genetic form that makes up around only 2 per cent of MND cases.
“The same day I received my diagnosis, I asked to register for trials. I knew a trial was my only hope because MND is a death sentence. Mum had only 18 months after her diagnosis, and my cousin had even less,” Jane said.
Determined to find a way forward, Jane arranged a genetic test to fast-track pairing her type of MND with appropriate trials. Through this process, she discovered a medication called Tofersen, which not only had the potential to slow the progression of her illness but also offered her some “hope and armour” against it.
Every three weeks, Jane and her husband Peter travel to Macquarie University Hospital in Sydney for a lumbar puncture (she has now had 27 of them), to receive treatment from renowned professor in the field, Dominic Rowe. Without treatment, the average MND sufferer has 27 months to live. Early intervention with Tofersen, however, can extend that to 10 years. “I’m lucky to have qualified for Tofersen,” Jane said. “It changes your perspective when there’s treatment, even if it’s not a cure. It gives you back a bit of fight.”
With the rise in MND diagnoses over the last 30 years—from 1 in 500 to 1 in 200 (a 250 per cent increase)—there has never been a greater need for ongoing funding to advance MND treatment and care. This urgency has inspired Jane, along with her daughter Natalie, to host a special event: the SOD Off MND Fun Run. The family-friendly event will be held on Sunday, April 6 in Toolamba.
The event promises a fun-packed day, with participants receiving SOD Off MND T-shirts, along with prizes, food and drinks. Most importantly, all proceeds will go toward MND research, specifically for Professor Dominic Rowe’s team at Macquarie University.
To find out more about the event and to add your weight to the fight against MND, please email sodoffmnd@outlook.com or call Natalie on 0418 409 896. Alternatively, you can use the QR Code provided to donate to this critical cause.
