• DMD Transition Video

    We want to know what is possible for young adults with DMD once they have left school - how are you spending your days, what things make you feel like an adult, how is life different now compared to when you were at school.
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We want to share your stories to help those young people still at school start to think and plan for their own adult lives.

About the Video

One of the key messages we heard from young people with DMD and their families during the first phase of this research project was how difficult it was planning for the future, when they weren’t sure what the future would look like. Many didn’t know what would be possible for them to achieve once they had left school, so preparing for this transition was even more challenging. 

Young people reported that they weren’t sure if they would be able to move out of home, how they might be able to attend university or TAFE, what sorts of activities they could do for fun or what sorts of equipment or aids might make life easier for them.

Who is needed?

We need young people living with Duchenne Muscular Dystrophy who are aged over 18 years, living in Australia and have finished high school.

We want your stories about what you are doing since leaving high school. This is so we can share these stories with other young people so they can start to think about what might be possible for them once they finish school.

Things we would be interested in hearing about might include;

  • Where you are living and who you are living with?
  • If you are attending university or TAFE – what you might be studying, how you manage during the day, what supports you have
  • What sorts of activities you do for fun both at home and within the community.
  • How you are managing your health since leaving school, including the transition to adult services.
  • What sort of equipment or aids you have found to be helpful and what they assist you with.
  • What sorts of things you are able to do now, as an adult, that are different to when you were still at school.
  • Whether you feel you are more independent now in terms of making your own decisions or managing finances compared to when you were at school.

What do I need to do?

To participate in this video we need you to complete the consent form below. Once you have completed this, you will be emailed a set of instructions on how to go about filming your story/interview for the video. Alternatively, you may  docDownload the Photographic and Media Consent Form198.5 KB  complete it, scan it, and email it to This email address is being protected from spambots. You need JavaScript enabled to view it. .

Photographic & Media Consent Form

PROJECT TITLE:

How can young people with Duchenne Muscular Dystrophy (DMD) and their families be assisted to identify and work towards a meaningful adulthood?

LAY TITLE:

Imaging a meaningful adulthood with Duchenne Muscular Dystrophy (DMD)

CONSENT FORM

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