Peer-led hub ‘The Loop’ launches, uniting Australia’s neuromuscular community
The Muscular Dystrophy Foundation Australia (MDFA) together with the neuromuscular community and its state-based organisations, has launched the country’s first national neuromuscular resource hub, The Loop.
A comprehensive resource for over 70 muscular dystrophy / neuromuscular conditions, the accessible and
Created through deep community consultation, a platform is a peer-led place for knowledge sharing and real conversation about the disability. It was funded by an Information, Linages and Capacity Building grant from the National Disability Insurance Agency.
“Neuromuscular conditions are as complex as they are unique,” said David Kay, MDFA’s Board Chair. “The Loop is an accumulation of years of collaboration, ideation and research into what this community needs to live more supported, fulfilling lives.”
“Prior to the hub’s launch, resources for those living with a neuromuscular condition were fractured, overly clinical and often very light on the realities of life post-diagnosis. They did little to show the positives of what life could be. The Loop breaks down these barriers.”
“The ability to find information about specific conditions with ease, as well as connect with others who are wheeling a similar path, is huge. It removes much of the ‘unknown’, which is critical to the community’s mental health and wellbeing.”
The Loop houses clinical information as well as real-life advice and forums. This includes the latest medical research, support services, condition information and peer created stories and life tips. It is also a growing space, with members of the community encouraged to contribute in an ongoing capacity.
“In addition to assisting those living with neuromuscular conditions, we also hope the site will help others better connect with the community. Misunderstandings often lead people to feel awkward in social situations or, even worse, exclude those with neuromuscular conditions altogether. Many living with neuromuscular conditions are not seeking special treatment. They just want to feel included and respected,” added Kay.
“Real life stories from those on similar journeys can be hugely influential. Be it raw, funny or confronting to read, our mission is to keep our network engaged and informed so that they feel confident and can make the best decisions possible. The Loop’s vibrant but honest nature reflects the hope and positivity that our community radiates every day.”