Big Red Roll Ambassador: Meet John

For 9-year-old client John, MDNSW have been integral in supporting him on his journey with Duchenne muscular dystrophy. We recently had the opportunity to sit down with John and his mother Bryony, our Big Red Roll and Stroll ambassadors, to hear their story and how MDNSW have supported them over the years.

The Big Red Roll & Stroll is MDNSW flagship fundraising event, aimed at providing people living with a neuromuscular condition the chance to celebrate who they are with their family and friends. Don’t miss out on the fun! Register your interest for our 2024 Big Red Roll & Stroll, today!


John has been involved with MDNSW since his diagnosis in 2019, back when he was only 5 years old.

“It was after a routine paediatrician appointment where we didn’t think anything was really wrong and the paediatrician requested some blood tests. We had to do the blood tests the same day and got called into the doctor’s office the next day where we were told that it was Duchenne MD,” said Bryony.

Although this was difficult news, Bryony and her family soon found support through her family and friends, who had done their research and introduced the family to MDNSW.

For the last five years since then, John and his family have become part of the MDNSW community, having regularly attend many programs and events including kids’ camps, Peer Connect lunches and fundraising events including Big Red Roll & Stroll.

When asked about some of John’s favourite memories with MDSNW, he highlights making friends, having fun and eating food… especially pizza, burgers and chips! He also credits the helpers at camp.

“There were a lot of helpers at camp. My favourite thing was how they helped me push my wheelchair and how I got to have fun with them.”

For Bryony, the programs and events MDNSW ran were the piece of “connection” she and her family was missing.

“It’s really nice having the connection with other people and knowing that there’s people there for us and understand what we’re going through as a family. I know that I can contact you guys with any questions I have or if we need any help with anything.”

She adds that the connection between John and other children with similar muscular issues has also made a huge difference in their lives.

“With John, he’s just a character in general so everything is funny when it involves him. He really enjoyed camp… everything about camp he seemed to enjoy and he loves the attention that he gets from all the counsellors and the helpers there. It’s just so nice to see him enjoying himself with other kids and the people there to help, it’s just beautiful.

MDNSW’s programs and events are funded by fundraising events such as the Big Red Roll & Stroll. The BRRS is a community fundraising event where community members and fundraisers can come together to walk, run, roll or stroll through Parramatta Park on event day or virtually to raise awareness about neuromuscular conditions and generate much needed funds that go towards MDNSW’s events and programs.

As a seasoned BRRS fundraising family, Bryony recalls fond memories of their time fundraising for the event in past years.

“I remember doing it at a local playground and there was a small group of us walking around but we had these blow-up dinosaur people come who walked with us. That caught a lot of attention, and they helped us just ask people in the playground for fundraising and that was really cool.”

“My favourite part of the Big Red Roll and Stroll was having a nice walk with my friends and family and the raffle my dad won,” John adds.

For families like John’s, BRRS is an important day to celebrate the neuromuscular community but also to raise awareness within local communities about neuromuscular conditions and the work that MDNSW do.

“I want all my friends to come to Big Red Roll and Stroll because I would have fun with them!”

“I’d love if people could get involve with fundraising for BRRS because the money donated goes directly to helping families like us. Knowing that other people are fundraising for stuff like this just really helps because it’s not an easy thing for John or us to go through. Just knowing that other people are actively doing something… it’s just really nice knowing that people care. So I really want everyone to help fundraise this year and join BRRS!” adds Bryony.

For more information on MDNSW’s fundraising event, Big Red Roll & Stroll, visit HERE. Registrations open now! Have any questions? Contact