Muscular dystrophy is a genetic disorder that gradually leads to the deterioration of muscular strength and function. Because of neurons being involved in the disease, the life expectancy is only until early adulthood.
The organization strives to improve the quality of life for people suffering with the disorder. The most common form that hits in early childhood is Duchenne Muscular Dystrophy in which an 8 year old becomes wheelchair dependent and continues to use it till his teens. The only development is that manual wheelchairs are replaced by electrical ones. Other types of neuromuscular disorders affect people of all ages. More than 20,000 people in Australia have some form of this disease and the estimated percentage is 100 per 100,000 head of population. Most forms affect babies or children but many also appear in adulthood or late age.
The causes of this disease and various treatments are under research. Though no cure has yet been discovered; proper therapy after an early diagnosis and support from certain organizations and groups has improved quality of life for people suffering with the disease.
Background and Vision of MDNSW
The Muscular Dystrophy Association came into being in 1957 and was then known as Society for Crippled Children, which is now called Northcott Disability Services. During those days, all work of the organization was done by volunteers thus, the role of people suffering and their families was instrumental in setting up the organization. The organization operated from South Sydney and then moved to its current location of Meadowbank which is near Ryde and more central. It has been there since 2008.
The organization runs many programs throughout the year for people with disorders and their families. This way the patients get to live closer to normal life through these events. There are many upcoming events like the Northern Rivers Spa where ladies will get pampered all day long near the breathtaking views of Angourie Rainforest Resort. There will be another event in September, 2015 for fathers who are suffering with a neuromuscular disorder where they can relax over the weekend while they enjoy fishing. Events like these are just an opportunity to relax and get away from the daily hum of life.
Muscular Dystrophy New South Wales is a training program that has especially been developed to understand people with the disease. The program helps community workers and home care workers, information officers, residential and healthcare workers as well as care managers. It has the support of NSW Government Family & Community Services. For over 50 years, the organization has been helping and supporting people with this kind of needs. The training consists of three phases.
The vision of this organization is to improve the quality of life of people who are living with a neuromuscular condition.
How your can help?
Like any charity organization, Muscular Dystrophy New South Wales also operates with the help of donations. You can donate on an ad-hoc basis, become a regular donor or obtain workplace giving.