We have posted a bit recently about the people who have disappeared since Shane’s diagnosis. Unfortunately, there have been many. And if I am honest, it is hard for that not to become a focus sometimes. When silence is loud, you feel it. But today I want to shift that focus. Because while many...
Fuck this disease. Fuck You MND. Some days it takes more than it already has. Some days, anger is easier than anything else. Mum and Shane went home after staying with us for just over a week, and within hours it was one of those days that reminds you how relentless MND can be. A lot of physical...
I want to share something that has been sitting heavily with me. Supporting someone with MND is brutal. There is no soft way to say it. Since Shane’s diagnosis, we have watched this disease take things piece by piece. First his voice.He lost his ability to speak and now communicates using a...
It’s been a long road, but I’m happy to share that the bathroom renovation is nearly complete! There are still a couple of finishing touches left, but the space is fully functional, and the transformation has already made a huge difference. A Big Win: Creating a Warm & Inviting Space One...
Finn’s Fundraising Featured Again in the Pakenham Gazette! Finn’s incredible journey in raising funds and awareness for MND has once again been highlighted in the Pakenham Gazette (12th February 2025 edition)! This week’s article shines a light on his dedication, the overwhelming community...
When someone is diagnosed with a terminal illness like MND, it doesn’t just affect them, it ripples through their entire world. The support of friends, colleagues, and the wider community can make all the difference. But for many, including Shane, the silence that follows a diagnosis can be one...
Team Glampa at the Great MND Relay – Our Personal Experience On the 8th of February, we gathered at Albert Park Lakeside Stadium as part of Team Glampa, ready to take on the Great MND Relay and show our unwavering support for Finn and Glampa, Shane Lewis. The team consisted of Finn (of course)...
Recently our little hero Finn was interviewed about his fundraising efforts for MND Vic by a reporter from the Pakenham Gazette. This weeks paper came out and there is a FULL page about his efforts complete with photos of him with MP Emma Vulin as well as Glampa Shane. A quote from Finn from the...
After finally kicking off the much-anticipated bathroom project, we’ve hit a significant roadblock with one of the key accessibility features: the height-adjustable basin. Our Occupational Therapist (OT) has advised that this basin is essential for Shane’s needs, but we’re now faced with two...
When Shane was diagnosed with Motor Neurone Disease (MND), it quickly became clear that the journey ahead would be both emotionally and financially challenging. While MND is a condition that requires significant care and specialised equipment, there are glaring funding and resource gaps for...
