Our history
Since our inception 56 years ago, supporting Western Australians with muscular dystrophy and other neuromuscular conditions has been at the heart and soul of our organisation – one of the great Emeritus Professor Byron Kakulas AO’s founding principles.
2023 began with us very sadly bidding farewell to Prof, a caring and passionate man whose drive to improve the lives of local communities and lifelong dedication to medical research changed the world.
As a child, Prof always knew he wanted to do something in science that would help people, leading him to set his sights on medical research. What he didn’t know then was the momentous and ground-breaking discovery he would make just four years after graduating from medicine.
After qualifying as a clinical neurologist, Prof decided to specialise in neuropathology. In 1960 this decision fatefully led to a then 28-year-old Prof being presented with a quokka that had died of paralysis in a lab at UWA.
After scouring veterinary literature and drawing on his medical background, he treated some of the living but paralysed quokkas with oral Vitamin E tablets. This had never been done in any animal before and he was amazed to witness their recovery. A biopsy revealed the total regeneration in skeletal muscle tissue, proving the potential for all muscle diseases to be treatable.
The results were published immediately, prompting worldwide research and Prof becoming an overnight authority in this field. It was a momentous discovery that would directly impact the treatment of muscular dystrophy.
Seven years later, in a suburban house in South Perth on April 13, a small group of parents whose children were impacted by muscular dystrophy gathered for a meeting with other interested parties. Chaired by Mr J W Downie of the Rotary Club of West Perth and with the support of Prof, it was decided to establish ‘The Association to Foster Research into Muscular Dystrophy and Allied Conditions’.
At a second meeting, the official name was confirmed as the Muscular Dystrophy Research Association (MDRA) of WA with Prof appointed as Founding Medical Director.
In 1996, Muscular Dystrophy WA provided the initial funding to Professor Sue Fletcher AO and Professor Steve Wilton AO to undertake research into therapies utilising the insights gained from Prof’s quokka discovery.
Throughout the 20-year duration of the research, MDWA contributed essential funding to develop a ground-breaking treatment for Duchenne muscular dystrophy, which became the first of its kind to be authorised by the FDA in 2016.
Our role is to fill the gaps and at the end of the day, our biggest wish is that we won’t even need to exist as an organisation – that cures have been found and no one has to live with a neuromuscular condition. Until that happens, we are here, every day, to make life as comfortable and enjoyable as it can be.
Although we began as an organisation solely focused on research, we engaged further with more Western Australians living with muscular dystrophy and other neuromuscular conditions and saw an unmet need for a more holistic approach to care.
In 2005, we began our social programs with the Quokka Kids and Teens Club and later expanded to include events for adults, carers and families. These programs are all about meeting others in the same situation, building resilience, nurturing connections, reducing social isolation and addressing the obstacles they face on a daily basis, as a united front.
In addition to funding research and social programs, our services have expanded to include counselling, equipment, NDIS support and advocacy.
In April 2012, after 45 years as our Medical Director, Prof stepped down from his official role but remained one of our biggest supporters and advocates. He continued to personally meet with each of our new employees to share the organisation’s vast history and his knowledge of neuromuscular conditions.
As of February 1, 2023, we have changed our name to Neuromuscular WA. Put simply, we want to reach and help more people with neuromuscular conditions, not just the dystrophies, and the name change will do just that. It will make it a lot easier for people to find us and to know that we can help them too.
We will continue to be a community-centric organisation and nothing changes as far as our services or focus, it’s just our name catching up with what we do and who we support. In fact, 43% of the people we support have a condition that isn’t a muscular dystrophy, so it just makes sense.
This decision followed much consideration and input from a cross-section of our stakeholders to ensure interest and support, including Prof before he sadly passed. Prof was incredibly supportive of this change and the greater access it would provide for new community members to reach us.
