Wednesday, 2 December 2020
I rise today to discuss the impact of muscular dystrophy and neuromuscular conditions, a group of inherited neuromuscular disorders that cause irreversible weakness and wasting of the muscles. I recently spoke with Charlotte Sangster, the CEO of Muscular Dystrophy NSW, located in Lidcombe, just outside of my electorate. Charlotte is working with families in Reid and around New South Wales to better support those living with the condition.
According to Muscular Dystrophy NSW, there are approximately 24,600 Australians living with a neuromuscular condition. A child who is diagnosed with muscular dystrophy gradually loses the ability to sit up, move their limbs, walk and, tragically, breathe. I recently attended a briefing, hosted by the Parliamentary Friends of Child and Adolescent Health, that examined Duchenne muscular dystrophy, a specific type of muscular dystrophy that affects one in every 3,500 male children. Tragically, boys who develop Duchenne muscular dystrophy are not expected to live past their 20s.
Another rare condition is facioscapulohumeral muscular dystrophy, known as FSHD. Symptoms, tragically, begin in early childhood and become noticeable in the teenage years. I recently met with Natalie Cooney, the chairperson of the FSHD Global Research Foundation, to better understand the challenges of this condition. The driving force behind this organisation is the director, Bill Moss, who was born with FSHD but only discovered this at the age of 27. The former Macquarie executive director is now on the search for a cure.
While all of these neuromuscular conditions differ in presentation and diagnosis, the impact on individuals and families affected is the same. They are all devastated by a rare, incurable disorder that takes too many lives too soon. Many of the families that are seeking to better manage the impacts of muscular dystrophy are active participants of the National Disability Insurance Scheme. An appropriate NDIS plan can make the world of difference for individuals with a severe disability and for their families, giving them greater flexibility, choice and quality of life. The Morrison government's commitment of a further $3.9 billion for the NDIS in the 2020 budget should bring these families confidence that practical support is available.
Still, more needs to be done to progress and help with screening, diagnosis and treatment and, ultimately, to find cures for muscular dystrophy disorders. I want to commend those organisations that I've recently met with who are working in the community and in medical research to help address the impacts of muscular dystrophy and neuromuscular conditions.