Chontell's story

Chontell beside her mother Shelly

"The test was positive... I carry the gene that is responsible for this awful disease. I now know my enemy!"

If you're 33 years old, shouldn't you be entitled to a full life, new experiences and making plans for the future? 

“Making plans is something I do, just the same as all women my age. However, unlike most women my age I am aware that those plans may never come to fruition because I come from a family with a long history of early onset Alzheimer's,” says Chontell Johnson. 

At 16, Chontell began to see a difference in her mother Shelly as her behaviour started to change dramatically. She became more argumentative, defensive, and sometimes even hostile. After rounds of inconclusive tests, Chontell met NeuRA’s Dr Bill Brooks who was able to confirm that her mother had dominantly inherited early onset Alzheimer’s. 

“As soon as I knew what mum’s condition was, I decided to have the genetic testing myself. The test was positive… My mum passed away four years ago now at the age of 47. To watch someone you love die slowly of that dreadful illness is heartbreaking... to know that this is a window into your own future… devastating.” 

Alzheimer’s is a devastating, progressive brain disease – the most common cause of dementia. It normally affects people over 65; however early-onset Alzheimer’s can appear as early as 30. There is no cure for Alzheimer’s disease. But your gift can speed our vital research. 


NeuRA’s Dr Bill Brooks has been working with Chontell’s extended family for over 20 years. He is part of the DIAN (Dominantly Inherited Alzheimer Network) study, a global collaboration studying the brains and bodies of siblings from families with the genetic mutation before any obvious outward symptoms arise. 

The aim is to identify markers of Alzheimer’s disease activity to monitor the effects of preventive drug treatments before symptoms arise. These biomarkers and drug treatments should be relevant not only to these families, but also for people of all ages at risk of Alzheimer’s disease. 

“I have always remained positive and I am hopeful for an answer, so when Bill informed me of the possibility of being a part of the DIAN study, it was as though I had been gifted an opportunity to be a part of the cure.” 

Chontell’s courage is inspiring as she not only faces the consequences of carrying the gene, but also because the DIAN study procedure is challenging, involving regular scans, blood tests and lumbar punctures.

I want you to share in Chontell’s sense of hope and excitement that we can conquer this cruel disease. Like Chontell, you may have already known the heartache of seeing a member of your own family or close friend battle illness, and cared for someone dear to you. You can share in this hope when you support our research today.

“Initial findings are really promising,” says Dr Brooks, “with changes in spinal fluid proteins detectable as long as 25 years before symptoms would normally be expected.” The next stage of the DIAN study involves trials of preventive drugs in families such as Chontell’s. This is a welcome but long-awaited development, giving hope not only to these families but also to the wider community.

This groundbreaking trial could have a dramatic impact on the lives of families affected by the devastating effects of Alzheimer’s disease, but to do more work like this we need your help.

Your generous gift will help us to continue our important research projects aimed at a better understanding of Alzheimer’s disease, which affects so many Australians of all ages. Government funding is essential but only supports part of our research. 

Chontell is a vivacious, career-focused woman who, thanks to the DIAN study, now looks forward to a brighter future. 

“These people; researchers, professors, doctors… they give their time, their energy and a good portion of their lives to finding answers that will help me to live my life on my own terms… that will give a future to my family.” 

With Chontell’s personal dedication to Alzheimer’s research we will be closer to a cure. With your gift, we can all help in the fight against this disease. 

So please, give generously today and help us to conquer this devastating disease. 

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