About The Memory Nook
Hi, I’m Leanne.
The Memory Nook exists because complex health conditions shouldn’t mean losing yourself, or losing access to the support you need to live well.
At a glance
- Founded by Leanne Hickson, who lives with CADASIL
- 25+ years of professional experience navigating complex systems, now applied to disability advocacy
- Free NDIS application resources built specifically for CADASIL and dementia
- Participant in the AusCADASIL research study
Connection
Building and maintaining meaningful relationships, even as conditions progress.
Dignity
Preserving each person’s sense of self, purpose, and value.
Identity
Honouring who people are, not just what they’re diagnosed with.
My Story: Living with CADASIL in Australia
The Memory Nook was born from lived experience – the kind that changes everything.
In 2020, I was diagnosed with CADASIL, a rare genetic condition that affects the brain’s blood vessels and can lead to stroke, cognitive decline, and vascular dementia. I was 42 years old.
But my journey with CADASIL didn’t start with my diagnosis. I watched my mum navigate this condition for years. Long before there was a blood test to diagnose it, I saw her struggle not just with the symptoms, but with systems that didn’t understand her needs. I witnessed her being managed out of her career after a stroke – losing not just her job, but her sense of purpose and identity.
In 2024, after years of declining health, Mum passed away. This loss, combined with my own diagnosis, gave me clarity: someone needs to make this journey easier for others.
As I reflected on Mum’s journey, I could see where we might have created more meaningful connections as her condition progressed. I could see where clearer information, practical tools, and genuine advocacy would have made a difference – not just for her, but for our whole family.
I started The Memory Nook because I believe people living with dementia and other conditions affecting memory and cognition deserve better. Better resources. Better support. Better advocacy.
Why The Memory Nook Exists
Every person deserves connection, dignity and identity – no matter what challenges they face.
Who I Am
My Background
I bring over 25 years of professional experience navigating complex, highly regulated systems — reading dense processes, finding the human need inside them, and building a clear path through. That experience happened to be built in banking and finance, but the real asset isn’t the industry. It’s the skill set.
That skill set taught me how to:
- Navigate complex systems and make them work for people
- Analyse problems and create practical solutions
- Advocate effectively with decision-makers
- Break down complicated processes into clear, manageable steps
- Understand what people really need (not just what they ask for)
These skills are exactly what’s needed when you’re facing an NDIS application, trying to access disability services, or figuring out how to advocate for yourself or someone you love.
My Personal Connection
I’m not an observer of this journey – I’m living it.
As someone with CADASIL, I know what it’s like to:
- Face an uncertain future
- Navigate medical appointments and specialists who may not understand your condition
- Experience cognitive symptoms that others can’t see
- Worry about when symptoms will progress
- Need support while still wanting to maintain independence and dignity
As a daughter seeing my dad care for my mum with dementia, I understand:
- The exhaustion of being a carer
- The grief of watching someone you love change
- The frustration of complex systems that are supposed to help but feel impossible to navigate
- The importance of preserving connection even as cognition declines
This lived experience, combined with my professional skills, positions me to create resources that are both practical and compassionate – because I know what actually works.
I have also agreed to participate in an AusCADASIL research study, to contribute to our collective understanding of this condition.
What The Memory Nook Does
Our focus areas
For people with CADASIL:
- Comprehensive NDIS application resources and templates
- Wellness tracking tools designed for your specific needs
- Connection to the Australian CADASIL community
- Information about research and support services
For people affected by dementia:
- Practical resources for maintaining connection and dignity
- Tools for carers and families
- Support for navigating care systems
- Stories and tributes that honour each person’s journey
For healthcare professionals & NDIS providers:
- Educational resources about CADASIL
- Guides for writing effective NDIS reports
- Training materials and consultation services, via our Elevana Learning partnership
Our Approach
Everything we create at The Memory Nook is guided by three principles.
Practical & compassionate
Resources that work in real life, created with understanding and empathy.
Accessible
Designed for people with cognitive challenges, following WCAG AAA standards.
Free for individuals
Everyone deserves access to support, regardless of financial circumstances.
Ready to explore our resources?
All our tools are free to download and use. We believe everyone deserves access to practical support, regardless of financial circumstances.