Author Archives: jvt23

First participants :)

THANK YOU to the first participants of this study. We’ve sat together to give the questionnaire a go. Yes, it is big, but so many interesting discussions have been sparked amongst all the family 😉 Parts of it have been fun, and parts of it have been really thought provoking. We’ll slowly put together what we learn from everyone. Enjoy whatever you’ve chosen with the vouchers 😉 E-mail us any time with questions on

The callout has started!

The first flyers asking about your interest to join this research were sent snail mail to 14-19year old members of the MDWA (Sept), SMAAA, MDSA (Oct) and FSHD Global (Nov 2014).

Thanks to Piper (MDWA), Jo (SMAAA), Amber (MDASA) and Hoda (MDASA) and Rania (FSHD Global) for giving teenagers an opportunity to become part of this research.

You will be able to connect with teens across Australia and New Zealand who may have similar experiences.

You will also be able to share your VOICE on your health, and help a whole bunch of people understand your point of view of LIFE.

We’d like to thank all teenagers who give the questionnaire a go with an iTunes or JB HiFi gift voucher.

If you are interested, let Piper, Amber, Hoda or Jo know, or e-mail us on .

You don’t need to do the questionnaire straight away – we’ll make a time that’s best for you, outside of tests & exams, so there’s no pressure.

If you are not too keen to take part at this point in time, that’s ok. If you provide your name on your reply slip, this means we won’t contact you again.




This site is being built to share information, updates and results of research with ALL 14-19year old teenagers living with a Neuromuscular Condition in Australia and New Zealand.

Thank you to all Young Adults with NMD, their families, patient organisations, Allied Health and Medical professionals who have helped to develop this study!

This research has been approved by the University of Notre Dame Human Research Ethics Committee (ref no 014122F). We will begin recruitment via the Patient Organisations in September 2014.

The Ethics Committees of Tertiary Children’s Hospitals across Australia will review this study to facilitate recruitment via the respiratory and/or neuromuscular clinics.

We’ll be underway soon!