Entering the vital next phase in our fight against Alzheimer’s

‘Take care of all your memories… for you cannot relive them.’

The words of the American singer-songwriter Bob Dylan are so true… for you cannot relive them.

For Amanda, a big turning point was the moment a test showed she carried the family’s early-onset Alzheimer’s gene. Would she see her 50th birthday? And would her most treasured family memories fade away like an old album of yellowing photos?

Another turning point was her vow to take part in a large clinical trial in the hope of sparing her children’s lives, since they had a 50% chance of carrying the gene too. “Sign me up… I’m your girl”, she said.

The day-by-day pressure on Amanda’s life in her Alzheimer’s clinical trial has been enormous.
And her bravery and endurance only heighten the pressure on us to keep up – and intensify – the fight against the hideous disease of Alzheimer’s.

‘Take care of all your memories… for you cannot relive them.’

The words of the American singer-songwriter Bob Dylan are so true… for you cannot relive them.

For Amanda, a big turning point was the moment a test showed she carried the family’s early-onset Alzheimer’s gene. Would she see her 50th birthday? And would her most treasured family memories fade away like an old album of yellowing photos?

Another turning point was her vow to take part in a large clinical trial in the hope of sparing her children’s lives, since they had a 50% chance of carrying the gene too. “Sign me up… I’m your girl”, she said.

The day-by-day pressure on Amanda’s life in her Alzheimer’s clinical trial has been enormous
And her bravery and endurance only heighten the pressure on us to keep up – and intensify – the fight against the hideous disease of Alzheimer’s.

Entering the vital next phase in our fight against Alzheimer’s

Research has dramatically improved our understanding of how Alzheimer’s changes the brain. It has also prepared the way for ground-breaking clinical trials of preventative drugs aimed at halting the disease process before symptoms develop.

But that means we need urgent funds to redouble our efforts to save lives by developing and testing effective treatments. So Amanda’s trial won’t have been in vain… her batteries of tests, MRIs, hospital PET scans, memory testing, blood collection, lumbar punctures and injections every four weeks for the past four years.

Our life memories are precious and they are us. Whether they are old albums, decaying VHS tapes or that chance interaction with an old friend on Facebook, the joys and difficulties of our life come flooding back, each memory shaping us in some way.

This is the tragedy of Alzheimer’s and other types of dementia. What shapes you as a person – your life’s experience and memories – are stolen.

Many of you will remember Amanda – wife, mum and grandmother. A genetic form of early-onset Alzheimer’s disease had ended her father and uncle’s lives all before their 60th birthday, leading Amanda to a medical test to determine if she had the same broken gene they all did.

Can you imagine being told that despite feeling healthy and strong, your genetic makeup will betray you, and Alzheimer’s will be in your future? It could be five years’ away, 30 years’ away, or tomorrow.

No wonder Amanda at the time asked herself “What preparations do I need to make today?”.

But Amanda decided to take action, joining a clinical trial known as DIAN-TU. The trial, undertaken in Australia at NeuRA and other DIAN study sites around the world, aims to reduce amyloid plaques, which are typically found in the brains of patients with Alzheimer’s disease.

We know that Alzheimer’s disease forms slowly, with symptoms typically showing in the last seven years of a 25-year disease timeframe.

Alzheimer’s disease will kill you

One of common misunderstandings about Alzheimer’s disease and other forms of dementia,
is that it won’t take your life.

Alzheimer’s disease is not about forgetting people’s names or misplacing your keys. It is
a progressive brain disorder that destroys cognitive skills (i.e. thinking, moving, behaviour),
the ability to care for oneself, speaking, walking and in later years, the basics of human life
– breathing, swallowing and fighting infection.

Turning 50

For many of us, turning 50 is a milestone we all expect to celebrate.

But when Amanda celebrated her 50th in February this year, I was immediately reminded of what she said 16 years ago.

“Am I going to see my 50th birthday?”

What great joy to know that Amanda has reached this milestone, and continues to live a life full of love.

The DIAN-TU Clinical Trial

Amanda was the first participant at NeuRA to be enrolled in the initial prevention trial, DIAN- TU-001, in late 2014. The trial program is an international effort supported by the US National Institutes of Health, the US Alzheimer’s Association and, here in Australia, by you, our supporters and donors. This is real science… the pointy end. Clinical trials are the last step before new treatments are made available to the public.

No Australian Government funding currently supports the trial.

There are 129 active participants globally, including 14 Australians, all of whom carry the mutated gene or have no or very early stage dementia symptoms.

Clinical trials take that crucial step from laboratory to the real world. They can include interventions such as an experimental drug, vaccines, surgery, behavioural therapy, education or changes to diet.

While research is painstaking, speed is of the essence. 14 years later, Amanda is now feeling the early signs of the disease.

But Amanda took action, joining the global Alzheimer’s DIAN clinical trial, of which NeuRA is one of the Australian partners. Over four gruelling years, Amanda has participated in every arduous step.

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