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About Muscular Dystrophy

What is muscular dystrophy?

Muscular Dystrophy, a genetic neuromuscular disorder which affects more than 20,000 Australians, has no cure. With more than 70 types of muscular dystrophy identified, the severity of deterioration of muscle strength and function varies, making the task of treating the condition even more difficult.

Muscular Dystrophy WA & how we help

Muscular Dystrophy WA is an organisation passionate about enriching the quality of life for people living with muscular dystrophy.

By providing personal support, advice and services, understanding and advocacy, and through connecting families and communities, Muscular Dystrophy WA strives to empower individuals to make decisions about their life and treatment.

By uniting against the common enemies of isolation, misunderstanding and compromised quality of life, Muscular Dystrophy WA aims to rally the entire muscular dystrophy community. We aim to become the single, accessible brand that helps all those living with muscular dystrophy to live a life they love and reach their full potential, without compromising the quest for effective treatment.

OUR BELIEFS

We believe no-one should be defined by their disease.
We believe we are better together.
We believe in practical help, not just hope.
We believe everyone deserves a chance to reach their potential.

In 2017 Muscular Dystrophy WA will celebrate 50 years as an organisation helping Western Australians living with muscular dystrophy.

Please join us on our mission.

Our current programs

By providing personal support, advice and services, understanding and advocacy, and through connecting families and communities, Muscular Dystrophy WA strives to empower individuals to make decisions about their life and treatment.

  • Social support including
    • School Aged Program (School Holiday Program and Camps)
    • Young Adults Social Group- Adults with muscular dystrophy
    • Carers of someone with muscular dystrophy
  • Individual and systemic advocacy Providing information, linkages and guidance on a range of issues including service provision, Government programs and funding
  • Education, information and linkages On going education & information program
  • Events including Annual Community Day
  • Duke of Edinburgh International Award a self-development program for young adults
  • Counselling free counselling is available to our members and their families
  • CoughAssist™ machines currently we provide over 60 families with these potentially life-saving machines

Research success supported by Muscular Dystrophy WA

Muscular Dystrophy WA takes great pride in our contribution to ground-breaking research developments. This funding reinforces Muscular Dystrophy WA’s focus on supporting world-class scientific research and is a key component of fulfilling our mission.

Since 1997, Muscular Dystrophy WA has provided more than $6 million dollars to support vital research into innovative therapies for muscular dystrophy. We are particularly proud that the research is Western Australian in origin and that Muscular Dystrophy WA support has assisted in ensuring that it is at the forefront of the field, worldwide.

The September 2016 announcement of the U.S. Food and Drug Administration (The FDA) accelerated approval for Eteplirsen (Exondys 51) as a treatment for Duchenne muscular dystrophy truly gives all of our community the first glimmer of real hope.

This therapy has been a significant focus of the research undertaken by our Honorary Life Members Professors Steve Wilton and Sue Fletcher for the past 20 years.

While this is exciting step in the right direction for those with Duchenne muscular dystrophy who have a confirmed mutation of the dystrophin gene amenable to exon 51 skipping, it also provides significant hope for other DMD target exons and the development of future treatments across different genes and different conditions.

At this stage we cannot say when this drug will be available for our local community, but what we can say is that through the approval from the FDA, we know the drug is deemed to work and it is safe to use. From here Sarepta Therapeutics will conduct a two-year, randomised controlled trial from which the benefits of the drug will be assessed.

Muscular Dystrophy WA will continue to campaign for muscular dystrophy as a national health priority, we will continue to work collaboratively with our community, researchers, government and other industry organisations to ensure that through a national collaborative approach in the future we can create an environment where our WA community has direct access to treatments of this type.

Article: World breakthrough for WA researcher for MDWA

How you can help

There are many ways you can support Muscular Dystrophy WA and those affected by muscular dystrophy.

Taking part in one of our events is a great way to show your support but you can also hold your own event or online fundraising campaign through our Everyday Hero Platform.

It’s not just about money, your time is valuable too…

Join the wonderful and highly valued team of Muscular Dystrophy WA volunteers who help us provide our services.

There are many ways in which the contribution of your time and skills would make a big difference. Here are just a few:

  • Assisting at special events
  • Assisting our Community Services Department with the delivery of services
  • Administration support in the Muscular Dystrophy WA Office

 

News

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01-Aug-2017

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