Community Liaison Group

My name is Sarah Shaw and I live in North Brisbane. I am a member of the neuromuscular disease community and was diagnosed in 2009 with a muscle wasting degenerative condition. Since then, I have experienced significant functional loss, which has strongly shaped my advocacy and leadership work. I live with my wife, Lou, and our aggressively affectionate cavoodle, Friday.

I enjoy getting out to live theatre and music events and spending time in nature or by the ocean whenever I can. I am also involved in the writing community, volunteering as a beta reader for published authors and quietly working on my own writing – one day I will let Lou hit send.

I spent twenty‑seven years working as a public servant within Human Services departments and am passionate about advocating for public policy that is transparent, fair, equitable, easy to navigate, and accessible to everyday citizens, while delivering real value to the community.

I am an engaged Muscular Dystrophy Queensland community member who accesses NDIS plan management and allied health supports. I have been part of the Community Liaison Group since day one and currently serve as Chair. I joined the CLG because I believe our community holds significant untapped talent and insight, and that lived experience should be central to shaping services, advocacy, and a more connected neuromuscular community.

I love connecting with others and being part of all sorts of communities – whether that’s my children’s school, church, book clubs, myositis communities, MD communities and more.

I enjoy spending time with family and friends, reading, learning new things and being creative through writing, art and music. I also love finding new ways to organise my home and life.

My background is in freelance journalism and chaplaincy. Currently, I’m chipping away at a few small projects that focus on the social, emotional and practical aspects of living with and navigating disability and chronic illness. I’m always keen for a cup of tea and a good chat.

I was diagnosed with myositis as a child (Juvenile Dermatomyositis). Now in my mid‑30s, I’ve lived through many different seasons and changes in capacity – from childhood through to parenting my own two young children, who are aged 8 and 10.

Living with myositis has taken me on an unexpected path, but it has also opened many doors and opportunities I never imagined. Most importantly, it has connected me with many lovely people along the way, including those I’ve met – and continue to meet – through the MDQ community.

Ultimately, being part of the CLG allows me to contribute to the bigger picture – helping cultivate positive change in the wider community and working towards creating smoother, more supportive paths for others in the future.

As a full‑time wheelchair user, I really value the opportunity to connect and converse with others who share similar experiences, and I’m passionate about helping create inclusive, accessible events where people feel welcome and supported.

I also have a wonderful Labrador, and we’re currently training to become a Story Dogs team, visiting schools to help children practise their reading. Before the chair, I was a primary school teacher, so this kind of volunteering really appeals to me – plus I love doing activities with my lab. 😃

If you have any ideas for social events, please get in touch with the CLG or MDQ. Every idea is worth exploring, and I’d love to hear from you!

My son, Fred, has Duchenne muscular dystrophy and was diagnosed just before COVID, when in‑person events were not able to go ahead. By being part of the CLG, I hope to help build a strong, connected community for Fred and his brother as they grow up. They both enjoy attending kids’ holiday fun days and community dinners, and through these events we’ve made great friends and learned so much from others on a similar journey.

Previously, I worked in healthcare and IT project management. More recently, I’ve been enjoying creative writing and hope to produce some fun children’s stories in the future.

We would love to welcome new members to the CLG. The commitment is just four Microsoft Teams meetings per year. I also regularly attend kids’ events, community dinners, and power wheelchair football games, as Fred absolutely loves the sport. Please feel free to say hello if you see me around – I’m always happy to chat.