‘Progressive. Incurable. Terminal. Nothing matters… I am going to die.’
In dark times, our minds can go to dark places.
‘Progressive. Incurable. Terminal. Nothing matters… I am going to die.’
These were the thoughts of a father, husband and community leader Shin Liu.
Shin had just been told he had motor neurone disease (MND).
Thoughts like these come from the depths of despair. They come from learning there is no chance of recovery, that you have two and half years to live and that every day your pain and torment will only increase.
‘There are days that I just cry like a baby. I’m meant to be the provider, the strong one. No son should have to change the underwear of their 57 year old father.’
Despite his prognosis, Shin continues to be a man you want to know. He is kind and articulate, with love in his heart. His dry sense of humour is at odds with his predicament, and thankfully, he no longer has those dark thoughts. Wheelchair bound and unable to move freely or care for himself, he spends time supporting others with MND and preparing his family for his eventual passing.
Shin has even planned his own funeral.
MND continues to be the number one reason why people visit NeuRA’s website. It can strike as young as 30, it twists and contorts the human body in the most horrific way, it progresses frighteningly fast and what is worst of all, there is not a single thing the medical profession can do to stop it in its tracks.
Not a single thing.
‘It’s not like cancer where there are at least options. It is hopeless,’ his wife Fong says.
MND is a brain disease that quickly and progressively destroys the ability to move, speak, swallow and breathe. We do not know what causes it, but in in about 10% of cases there is a genetic link. Destroying the nerve cells (neurones) that control muscle movement, it is also referred to as Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease.
When you consider half our body weight is made up of our 800 odd muscles, which are designed to facilitate the basics of human movement and life itself, you can understand how MND has such a dramatic effect. Sufferers literally waste away to skin and bones.
This excruciating disease is incurable and terminal. Life expectancy after diagnosis is 2 to 3 years.
Shin’s eldest son Sam reflects on this painful reality. ‘MND desperately needs a cure, or even basic treatment. My heart sank when I heard that clinical trials are still years away. My dad doesn’t have years.’ You can read more of Sam’s reflections by clicking here.
However, we must not think it is undefeatable… there was a time we said Polio was incurable, and look where we are today.
Step by step, together we will defeat MND.
With your partnership, NeuRA researchers are making exciting advancements. A ‘model’ of MND has been created which mirrors the disease in humans. This incredible advancement is helping us learn more about the progression of MND (at a cellular level) and is used to test and monitor new drug therapies in a safe environment.
Even more encouraging is what we’ve learnt about a protein called TDP-43. We now know that in more than 90% of MND cases, changes to this protein play a vital role in motor neurone degeneration. In pre-clinical (non-human) trials, we have found that this protein can be controlled by a specially engineered peptide sequence (i.e. medication) which has the potential to stop MND in its tracks.
But here is the most exciting development… we are observing improvements in movement, behaviour and memory upon administering this medication.
This is innovative, ground-breaking research in action. We need your help to accelerate this research, which will in time enable clinical trials in people living with MND.
How you can help defeat MND
Frankly, MND research in Australia is greatly underfunded. 80% of the time we ask for money from the government, we are not successful. This isn’t fair and means families like the Shin’s will continue to hear ‘there is nothing we can do.’
As researchers, we believe in a brighter future. We will not be defeated into thinking finding cures is too hard. It is the generosity of people like you that make research possible.
We are eager to move toward clinical trials – the pointy end of science, and you can help make that possible with a gift today. To provide even greater confidence and continuity, please also consider becoming a Discovery Partner by making a monthly commitment.
Find out more at https://foundation.neura.edu.au/appeal/shinsstory/