Hunter and Kyle at SciFam 2025

Hunter, a Muscular Dystrophy Queensland client, and his dad Kyle travelled from Queensland to Philadelphia to attend SciFam 2025, a biennial conference for families and professionals connected to congenital muscular dystrophy, nemaline myopathy and titinopathy. Both are affected by changes to the titin gene. The conference offered them the chance to meet researchers, connect with other families and be part of the global titin community for the first time.

India’s amazing art

India Parker is a 26-year-old self-taught artist who specialises in fine art, with a particular focus on fine line and stippling techniques. Raised in Brisbane, India was diagnosed with limb-girdle muscular dystrophy (LGMD), a progressive neuromuscular condition that affects the muscles of the hips and shoulders. Despite the challenges of her diagnosis, India has pursued her passion for art with determination and creativity. She received her first art commission at the age of 14, marking the beginning of a journey that continues to inspire those around her.

Tristram represents Australia

ABC Days Like These

Alyce Nelligan is used to being a trailblazer. She hasn’t met a barrier she hasn’t been able to smash through. Until now.

Born with minicore myopathy, a rare muscle disease, she was the first at her primary school in a wheelchair and the first with a physical disability to graduate from her high school in Toowoomba, Queensland.

Tracey shoots for target

Following a “come and try” weekend at Belmont Shooting Range, Tracey was introduced to rifle shooting – and she hasn’t looked back since.

“I wanted to try drag racing but decided on shooting instead,” she says. “If you get the opportunity to do something a little outside your comfort zone, just do it. Jump. Do it.”

What began as a curious step outside the ordinary has grown into a rewarding and empowering pursuit for Tracey, reminding others that it’s never too late to try something new.

Creativity takes courage

Anthony is a talented artist and author, creating his own unique range of beautiful artwork and children’s books.

Anthony learned at a young age that his physical limitations meant he’d have to work harder to achieve his goals.

The Politics of Pain, by Peter Slade

Read thoughts on equitable access to pain management from one of our community members.

Feel free to send any tips or stories into us at info@mdqld.org.au

Nina flies high

Nina, one of our community members shares her recent adventure in the Hunter Valley.

Feel free to send any tips or stories into us at info@mdqld.org.au

ABC Health Report – Gene Therapy Advances

The U.S. Food and Drug Administration (FDA) have voted at their formal meeting at the end of May, that approval moves forward for a gene therapy for Duchenne muscular dystrophy. (8 min listen).

Host: Dr Norman Swan, Guest: Prof John Rasko, AO

World Duchenne Awareness Day Documentary: Breaking Barriers.

This touching 30 minute documentary, directed by Nicoletta Madia, beautifully captures the journeys of people and their families across the globe who are breaking barriers in Duchenne.