Motor neurone disease – an horrific disease.

‘On 22 October 2008, my father was diagnosed with motor neurone disease. From that moment, my family’s life, as we knew it, changed forever.’

Jim Demirov was a strong man who enjoyed a successful drag racing career, had a black belt in Karate, and who loved being physically fit. But in his mid-50s, he was struck down with motor neurone disease (MND), a devastating brain disease that quickly and progressively destroyed his ability to move, speak, swallow and breathe.

MND is incurable. The average life expectancy after diagnosis is 2 to 3 years.

Jim’s daughter Shelly, who cared for him through his illness, says it broke her heart to watch her father’s life-strength drain away.

Just doing simple tasks became frustrating and overwhelming for dad. His mind was willing but his body was giving up. To walk a step was a giant feat in itself and breathing became increasingly difficult. To look on as my mother and brother gently cared for dad, and dealt with the never-ending changes MND would inflict on him, was both beautiful and heart wrenching.

Will you support our MND research today? Your gift of will help us change the future for people living with the disease, providing support for our scientists and hope for our patients.

‘On 22 October 2008, my father was diagnosed with motor neurone disease. From that moment, my family’s life, as we knew it, changed forever.’

Jim Demirov was a strong man who enjoyed a successful drag racing career, had a black belt in Karate, and who loved being physically fit. But in his mid-50s, he was struck down with motor neurone disease (MND), a devastating brain disease that quickly and progressively destroyed his ability to move, speak, swallow and breathe.

MND is incurable. The average life expectancy after diagnosis is 2 to 3 years.

Jim’s daughter Shelly, who cared for him through his illness, says it broke her heart to watch her father’s life-strength drain away.

‘Just doing simple tasks became frustrating and overwhelming for dad. His mind was willing but his body was giving up. To walk a step was a giant feat in itself and breathing became increasingly difficult. To look on as my mother and brother gently cared for dad, and dealt with the never-ending changes MND would inflict on him, was both beautiful and heart wrenching.’

As a way of maintaining hope, Jim became involved in NeuRA’s Motor Neurone Disease research.

‘Dad knew that a cure wouldn’t be found in his lifetime, but he believed wholeheartedly in research. Dad said his hope never faltered, and felt proud that he could offer something. He was very passionate about the research being done at NeuRA. His hope was that, in the years to come, no one would have to suffer as he’d done because it’s an absolutely horrific disease.’ 

Jim passed away almost three years ago at age 59. Shelly says his passing at such a young age has been terribly hard on her family.

‘It will be exactly 3 years on 11 July since dad died. His legacy in taking part in research was a hope for future generations – that something is found to stop the progression of the disease. He hoped that more awareness would mean more support, which means more money, which means more research.’

Shelly says she is determined to keep up the fight to find a cure.

‘Dad told me to try and reach as many people as I could. It’s a vicious, cruel disease. I hope with everything I have that, one day, a cure or even an effective treatment, can be found.’

Whilst there is still much to do before it can be made available to the public, the team at NeuRA has developed a non-invasive test that, we hope, will enable people with MND to be diagnosed with greater accuracy than is currently possible. This may mean that in the future doctors could initiate treatment earlier and improve a patient’s quality of life.

The team is also investigating the links between MND and frontotemporal dementia (FTD), which together are a leading cause of dementia, particularly in people under 65. Investigating MND and FTD together helps focus on translating findings into better clinical information and intervention studies….but this research is very costly.

We are committed to conquering MND. But, to do this, we need your help.

Research is the only answer.

Will you support our MND research today? For our researchers, even a dollar helps! And for as long as this insidious disease remains incurable, with death the only end for a patient, your contribution is crucial.

So please, give generously – your gift will make a huge difference. Thank you for your support.