‘Amanda, the test has shown that you carry the family gene’

How would you feel learning that, at aged 34, an inherited gene will result in young onset Alzheimer’s disease?

How would you react to the gene being dominant, meaning your children have a 50% chance of carrying it?

How would you come to grips with, despite a single symptom today, your genetic makeup betraying you, leaving you and your family with ‘the living death’?

This is Amanda’s story.

Today, Amanda is part of a global, groundbreaking clinical trial of dementia preventative drugs aimed at halting the disease  before symptoms develop. It is very exciting, and you can read her full story below.

The most exciting aspect of this trial program is that the findings should be relevant for all sufferers of Alzheimer’s disease.

But with no current Australian Government funding supporting the trial, will you please open your hearts and give generously to NeuRA, so we can continue and grow this critical research. Your gifts are fully tax deductible, and will support the trial and the full range of vital Alzheimer’s and dementia research at NeuRA.

Or perhaps you would like to become a NeuRA Discovery Partner and enjoy the simplicity of monthly giving, knowing you are providing even greater certainty to confidently plan for tomorrow.

Thank you.

 

What memories do you have of your 30s?

Were you raising kids, working hard and chipping away at the Australian dream? Perhaps you travelled, excelled in a career, or spent time caring for a loved one.

I am certain your memory doesn’t include learning you will die very young – just like your uncle and father – from Alzheimer’s disease.

This is Amanda Ayliffe’s story. At the age of just 34, she discovered she had inherited a damaged gene.  A gene that would, with nearly 100% certainty, result in young onset Alzheimer’s disease by (typically) age 50. A dominant gene, meaning her children had a 50% chance of also inheriting the gene.

A gene that will, in time, steal everything.

How would you feel knowing that despite no symptoms, your genetic makeup would betray you, leaving you and your family with what is sometimes called ‘the living death’?

I asked Dave, her husband, what he said in the car after the test result.

‘We were in shock. All I could ask was ‘is there anything you really wanted to do in life?’’

It’s the obvious question to ask, but when we ask it, what we’re really asking is ‘what do you want to do before you die?’ 

This is a question that with your help, no 34 year old will be asked again.

Fourteen years later, Amanda is feeling the early signs of the disease. She shares what that’s like on film below and in the ‘Sign me up… I’m your girl, which you can download by clicking here.

Memories make us who we are

We love to reminisce, but more than just remembering good times or special moments, memories connect us with loved ones, remind us to care for ourselves and make mundane tasks possible.

Alzheimer’s disease destroys those memories, your sense of ‘self’ and your recognition of others. Can you imagine building a lifetime’s worth of memories with someone, only for them to struggle to remember who you are? Sadly, many of you won’t have to imagine – you live it.

People like Amanda are special because of their rare genetic profile, and thankfully she couldn’t wait to be a NeuRA volunteer. But research takes time – time that people living with Alzheimer’s do not have.

To help speed up discoveries, and with the end of the financial year around the corner, please consider a tax deductible gift today. Or perhaps you would like to become a NeuRA Discovery Partner and enjoy the simplicity of monthly giving, knowing you are providing even greater certainty to confidently plan for tomorrow.

Amanda is one in a million

Amanda’s test result presented a unique opportunity to investigate what was happening in her brain before and throughout the disease progression. Researchers rarely have this chance to draw on such rich information, and we’re excited to say it 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.

The most exciting aspect of this trial program is that the findings should be relevant for all sufferers of Alzheimer’s disease.

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 wonderful supporters and donors.

We have some progress to report about the trials. DIAN-TU-001, which is testing two different drugs against placebo, has been extended for a further two years. If a preliminary analysis at the end of 2017 shows that either or both of the drugs affects brain scan and spinal fluid measures of disease activity, the trial will continue with these drugs to see whether they also prevent the development of memory loss. In addition, a third drug is being introduced to the trial later in 2017, requiring a new group of participants from families like Amanda’s.

No Australian Government funding currently supports the trial.

This is real science… the pointy end. Clinical trials are the last step before new and exciting treatments are made available to the public, and you can help us continue this important work with a gift today. Your gift will support the trial and the full range of vital Alzheimer’s and dementia research at NeuRA.

Amanda thanks you

Amanda endures lumbar punctures, blood collections and regular injections as part of the trial. Yet she says it’s not for her future, but for her family’s and the millions of people living with Alzheimer’s. She asks this of you;

‘Please help me help NeuRA to raise the much-needed funds to continue this research project in Australia – together we can all be heroes and make a difference.’

Will you help Amanda and NeuRA make Alzheimer’s history?