Muscular Dystrophy WA has been supporting families like the Hatherly-Hughes family for over fifty years click here to read their story.
Founded in 1967, Muscular Dystrophy WA was borne by Professor Byron Kakulas in conjunction with a small group of parents with the Rotary Club of West Perth.
Globally renowned in his field, Professor Kakulas changed the way the world viewed muscle diseases when he made the momentous discovery that a paralytic disease affecting the Rottnest Island Quokka could be treated for vitamin E deficiency.
Up until then it was thought that muscle diseases could not be treated.
Muscular dystrophy is a genetic neuromuscular condition where muscles slowly degenerate and weaken. Around 700 to 800 people in Western Australia are affected by the condition and around 20,000 people around Australia are estimated to have some form of the condition.
Now in the midst of its 50th anniversary celebrations, MDWA is commemorating five decades of funding research and providing social support for those affected by the disease as well as their families.
Muscular Dystrophy WA CEO Hayley Lethlean said with the right support many people with muscular dystrophy were leading full lives which included studying, travel and building great careers.
Ms Lethlean said while many people led rich lives, her big wish was for a more inclusive wider community to increase participation opportunities for children and young adults with muscular dystrophy and allied conditions.
Every young person has the right and should been given the opportunity to participate, regardless of situation or circumstance. There is abundant evidence to support the fact that social participation enhances psychosocial health and quality of life.
So treat others as you wish to be treated and perhaps think about how activities can be adapted to suit all abilities.
Mrs Lethlean said the range of programs and care offered by MDWA, included a Cough Assist Outreach Program to provide respiratory support, age appropriate social and respite programs as well as education and advocacy programs and research scholarships to empower those living with muscular dystrophy to lead full lives.
There was a major emphasis on social support, and an extensive range of events were held throughout the year to connect the community of people living with muscular dystrophy.
On Saturday, September 2, the 50th Anniversary Gala will be held.
Later in September, Muscular Dystrophy WA will host a male carer event and from October 3 to October 5 a camp will be hosted at the Landsdale Farm School.
The year of celebrations will be wound up with a 50th Anniversary Long Table Lunch on, Sunday, November 26.
To learn more about Muscular Dystrophy WA visit www.mdwa.org.au