‘I’ve got the best job for you dad. Your shaky arm will be perfect for it!’

Children… honest and insightful. Their innocence warms the heart.

But what words do you use to explain to a child that daddy has an incurable brain disease? What words tell them that in time he may not be able to play football in the park, let alone feed himself? What words help them understand that in the later stages, dementia may also strike?

Aged just 36, this was the reality that faced Steve Hartley. Parkinson’s disease didn’t care he was a fit, healthy, a young dad and devoted husband. It also didn’t seem to care his family had no history of it.

The key to defeating Parkinson’s disease is early intervention, and thanks to a global research team, led by NeuRA, we’re pleased to announce that early intervention may be possible. Your support, alongside national and international foundations Shake it Up Australia and the Michael J Fox Foundation, researchers have discovered that a special protein, found in people with a family history of the disease increases prior to Parkinson’s symptoms developing. This is an incredible step forward, because it means that drug therapies, aimed at blocking the increase in the protein, can be administered much earlier – even before symptoms strike.

The next step is to understand when to give the drug therapies and which people will most benefit from it.

But we need your help. A gift today will support vital research and in time help medical professionals around the world treat Parkinson’s disease sooner, with much better health outcomes.

Thank you, in advance, for your support.

 

Children… honest and insightful. Their innocence warms the heart.

When Steve shared this memory I thought to myself – what words do you use to explain to a child that daddy has an incurable brain disease? What words tell them that in time he may not be able to play football in the park, let alone feed himself? What words help them understand that in the later stages, dementia may also become part of life?

There simply are no words.

This was more than a pinched nerve

If you or someone you love lives with disease or disability of the brain or nervous system, you will remember the first time you suspected it… something was wrong.

Steve remembers. It was the day his right arm started involuntarily shaking. Dismissing it as a pinched nerve was an understandable reaction from a fit, articulate and confident 36-year-old with no family history of neurological conditions.

A couple of months later came a question. Your GP may have asked you a similar one. It’s the question that shakes you to your core and leaves worries about your family’s future.

Steve does your family have a history of Parkinson’s disease?’

Confirmation of the diagnosis stopped Steve and his wife Claire in their tracks.

‘My jaw just hit the floor. I said to myself ‘no, I don’t want that’, but it was true – I had Parkinson’s disease.’

Steve – a young husband, dad and provider – had been told he had a degenerative brain disease that in time could make the most menial of activities, like bringing a fork to your mouth, impossible.

Worse, it may leave you with no concept of what a fork is.

You can help, and provide hope for someone like Steve.

Taking each day as it comes

Parkinson’s disease, the second most common neurological condition after dementia, is a disease that causes trembling, stiffness, slowness of movement and loss of fine motor control. The disease results from a complex interaction between inherited and environmental factors. It destroys neurons in an area of the brain called the substantia nigra, and tragically between 50% and 80% of sufferers will be dealt a further blow, with dementia striking.

Steve is lucky. Not because he has a mild form of the disease. Not because of medications that reverse the decay of affected brain cells. Not because it was found early.

Steve is lucky because of his positive attitude.

‘I don’t want pity. I don’t want people to ask if I’m alright all the time. I just want to live for the now and get on with life’.

His optimistic outlook gives him great strength, but life has changed. His symptoms have worsened and he is more dependent on medication to control them. Frankly the future is uncertain and I have wondered what fears his wife and kids have for the years to come.

‘I decided to run the City 2 Surf in 2014 to raise money for research, because I thought to myself – if I don’t do it now, will I have another chance? We just don’t know what else Parkinson’s disease can start.’

Parkinson’s disease is progressive and incurable. Symptoms are debilitating. To demonstrate just how difficult living with it is, reflect upon your day. Think about how often you used your arms, legs, fingers, toes and the muscles in your face, head and neck. Did you make a cup of tea? Have you driven a car? Did you write with a pen? Have you hugged a love one? Did you smile at a neighbour, laugh with your partner or make a funny face at a grandchild?

How many times have you opened your mouth to speak or breathe?

Parkinson’s disease gradually steals everything. Medication, which has remained unchanged in several decades, does not stop or reverse the damage being inflicted upon the brain, and becomes less effective at controlling symptoms as time passes.

We will Discover, Conquer and Cure.

For people like Steve, Parkinson’s disease has already destroyed up to 70% of vulnerable brain cells by the time symptoms appear… meaning much of the damage is done. The key to stopping the disease is to find new ways of identifying who is at risk and taking early action to stop the damage to the brain.

A global research team, led by NeuRA, is doing just that and we’re pleased to announce that early intervention may be possible.

Thanks to the support of donors like you, and national and international foundations Shake it Up Australia and the Michael J Fox Foundation, researchers have discovered that a special protein, found in people with a family history of the disease increases prior to Parkinson’s symptoms developing.

This is an incredible step forward, because it means that drug therapies, aimed at blocking the increase in the protein, can be administered much earlier – even before symptoms strike. This will provide hope for sufferers and their families with both the inherited form of the disease, and those where the cause is unknown.

The next step is to understand when to give the drug therapies and which people will most benefit from it.

Will you help us conquer this terrible disease?

A gift today will support vital research and in time help medical professionals around the world treat Parkinson’s disease sooner, with much better health outcomes. When you give, you’re also joining our vision of preventing and curing diseases and disability of the brain and nervous system.

Children… they see the world so innocently and beautifully. You might be wondering – what the job Steve was perfect for with his shaky arm?

Dusting the pancakes with icing sugar.

Will you help people like Steve dust the pancakes by choice, and live a life free from the awful symptoms and fear of what the future may hold? Our work is only made possible by your vision and generosity. Will you partner with NeuRA to defeat this disease today?

Please, give a gift today.

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