A special message from Emma Vulin MP, the Member for Pakenham. Our family first connected with Emma not long after her own MND diagnosis, which came around the same time as Shane's. While we wish our paths had never crossed because of this disease, we are incredibly grateful they did. Finn has...
One thing I wish more people understood about Motor Neurone Disease is that right now, despite all the hope, fundraising and research, THERE IS STILL NO CURE. We all desperately wish for that to change one day. We need it to. There are a small number of medications that have shown limited success...
I completely missed this one when I was interstate last week for work. Great work fundraising Finn! We are all very proud of your efforts. backdating this post to the date the article was released. We are incredibly grateful to the Pakenham Gazette for recently sharing Shane’s story and helping...
Today Alexandra Newspapers shared Shane Lewis’s story, and while it’s incredibly hard to see your family’s journey laid out on a newspaper page, I’m also grateful for the opportunity to help shine a light on what living with MND really looks like behind closed doors. This article talks...
It is with great sadness that we share that Shane Lewis passed away peacefully at home today in Alexandra (Sunday 19th April 2026), with his wife Marlene Answer-Lewis by his side, surrounded by his dogs and family. After a two year battle with Motor Neurone Disease, Shane faced everything with...
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...
When Shane was diagnosed, we expected challenges. We expected difficult conversations, medical appointments, and adjusting to new realities. What we didn’t expect was the sheer mountain of paperwork that came with it. We have two lever arch files full of forms, applications, and endless...
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...
