NEUROMUSCULAR WA CONTINUES SUPPORT FOR LIFE
In February 2023, Muscular Dystrophy WA (MDWA) officially transitioned to Neuromuscular WA, marking a new chapter for the organisation’s commitment to supporting Western Australians with neuromuscular conditions.
The name change underscores the organisation’s focus on helping individuals with a wide range of neuromuscular conditions, not limited to dystrophies.
Approximately 40,000 Australians live with neuromuscular conditions (NMCs), a group of rare, genetic conditions that impact the muscles and the nervous system supporting them, causing muscle degeneration and weakness. While there’s presently no known cure, Neuromuscular WA significantly impacts the quality of life, happiness and wellbeing of those it supports, guiding them to get the best support and services they need and creating opportunities to connect with others in similar circumstances.
The organisation’s legacy intertwines with the pioneering research conducted by prominent Western Australian scientists, including the late Prof. Byron Kakulas AO, who served as MDWA’s Medical Director until 2012. Prof. Kakulas, a staunch advocate and supporter of MDWA, passed away in early 2023, shortly before the organisation’s rebranding.
This legacy is also bound in the history of the Stan Perron Charitable Foundation, with Stan Perron AC contributing funding towards research carried out by Prof. Kakulas and his colleagues since the 1960s. In 2017, MDWA awarded Stan Perron Honorary Life Membership for his three decades of patronage.
Today, the Foundation stands as one of Neuromuscular WA’s partners, offering financial support to assist the organisation in serving around 700 Western Australians and their families.
Beyond providing monetary donations, Perron Group’s Toyota WA has also proudly sponsored Neuromuscular WA’s Toyota Golf Classic since its inception in 2008. Now in its 17th year, this event has raised more than $850,000, significantly contributing to support, advocacy, and essential services for Western Australians affected by neuromuscular conditions.
Neuromuscular WA delivers vital support via information and education, advocacy, counselling, system navigation, equipment and social support. These all underpin ongoing medical care, providing a holistic approach in achieving better overall health outcomes for those living with neuromuscular conditions, their carers and family.
Moreover, the organisation invests into innovative therapies, clinical care and sponsors researchers investigating ways to mitigate the impacts of neuromuscular conditions and comprehend their underlying causes with the aim of one day developing a cure.
Despite the name change, Neuromuscular WA remains committed to its mission of providing “Support for Life,” ensuring those impacted by neuromuscular conditions can lead the very best life possible.
More information about Neuromuscular WA’s services, advocacy and research initiatives is available on its website.
Published: April 2024