• Project DMD

    This website will endeavor to keep you up to date on ProjectDMD, and the research we are completing on the transition to adulthood for young people with Duchenne Muscular Dystrophy. We will post updates on where the research project is at, as well as invite young people to participate at different stages. Read More
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  • Project DMD is the research project started in 2012 through the University of Queensland. We are exploring how young people with Duchenne Muscular Dystrophy can be supported to imagine and work towards a meaningful adulthood. Ethical approval has been provided through the University of Queensland Behavioural and Social Sciences Ethical Review Committee (Reference No. 2012000646).
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  • Young people with DMD are now living longer and reaching adulthood. This milestone can bring with it additional physical and emotional challenges, which means planning for this life stage is so important. Project DMD hopes to learn how to best provide this support to ensure meaningful outcomes in adulthood.
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  • Tegan Pinese is coordinating this research project, and is an occupational therapist currently working at MontroseAccess. Dr Merrill Turpin and Dr Jodie Copley are also members of the research team.
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  • We want to know how young adults with DMD are living their lives. Come on, tell us your stories in our DMD video resource.
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  • What will I do when I leave school? Will I live at home or move out? What sorts of things will I do with my friends? How will I get around in the community? These are all questions you might find yourself needing to answer when thinking about leaving school and entering adulthood.
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  • A collection of resources and websites for young people, families and health professionals when planning for adulthood.
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  • Contact us and we will do our best to answer all of your queries.
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FAQ

  • What is Duchenne Muscular Dystrophy (DMD)? +

    Duchenne Muscular Dystrophy (DMD) is a genetic condition that results in progressive muscle weakness and loss of physical ability. It primarily affects boys and is typically diagnosed in early childhood. While there is no cure for DMD, advances in the care and treatment of this condition have contributed to extending the lifespan of young people with DMD today. Young people with this condition are now living into adulthood.
  • What is ProjectDMD about? +

    This research project explores the experience of young people with DMD as they enter adulthood. We want to learn more about what it is like to live as an adult with DMD, as well as how young people and their families can be more supported to plan and prepare for this transition.
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PROJECT UPDATES

We have completed the first phase of interviews with young people with DMD, parents & caregivers and health professionals. The next step is to analyse these interviews and pull together the key pieces of information participants are telling us.

The next exciting part of the project is the production of our DMD Video Resource. We will be looking for young adults with DMD to be involved. 

What Our Participants Are Saying

  • Researcher: And what does that bring to your life, being able to get out and about in the community?
    Young Person (22 years) Well, it makes me feel a bit more independent, to be able to go out and do things that I want to be able to do.
  • Researcher: How do you create independence here at home for yourself?
    Young Person (22 years): I guess just going out on my own, getting a taxi on my own. Being moved out –we’ve got a garage room and that’s more removed from the house, so I’ve got my own entrance and exit and I can go out without telling someone, if I wanted.
  • Researcher: What would having a job mean to you?
    Young Person (25 years old): More acceptance for myself, next time people see another person with a disability in the street they might not write them off straight away, they’ll give them a chance to prove themselves like I wanted. Even if I didn’t get that myself I feel that it might make it easier for someone else to follow along my path or to just don’t care what people think and just do what you want to do.
  • Researcher: What are you looking forward to about turning 18 years?
    Young Person (15 years): The pub and stuff and meeting friends. Maybe I could buy Foxtel, sort of thing, to watch more things on TV.
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