Sincere gratitude goes out to all who have contributed to the MyLifeMyVoice Teen NMD study. For further information, to connect or continue to build on this work, please e-mail:

Scientific publication – friends and family make the difference

A few years’ in the making….Finally the data is official 🙂 The journal Neuromuscular Disorders has reviewed, accepted and published the data of the wonderful young people and their families who participated in this study. THANK YOU. 

Research Posters

Here are young people’s thoughts on health and learning about health. Healthcare professionals can learn a lot from young people!

And while crunching lots and lots ….and lots of numbers….friends make the difference to health in young people with NMD.

Summary of research describing quality of life and wellbeing prior to the MyLifeMyVoice study

We looked at published research measuring quality of life and wellbeing in youth with NMD. The scientific process to evaluate and summarise published research is called a systematic review. This work is now publicly available through the journal Archives of Physical Medicine and Rehabilitation. Thank you to the librarians and to Jenny, Shane, Andrew and Gail for all the help to write up what we found:

Results are taking shape….

Living with severe muscle weakness no doubt impacts on health. In our study, 47 young people living with NMD have described their health and wellbeing. Interestingly, the results for those who use a wheelchair and breathing support compared with those who can walk may not be what able-bodied people may expect. Watch this space for more info as our statistical analysis unfolds….

This is your VOICE

Eleven participants shared their insights about health and healthcare engagement in interviews with the researcher. These young people were picked from all MyLifeMyVoice study participants to represent diversity in age, gender and the different experiences they noted in their questionnaire answers.

Their words are now in a scientific publication, searchable on Pubmed and available here.

THANK YOU to the research participants for your generous time and openness.

Learning and Learning…

Thank you to all who have completed the questionnaire. We are in the process of analysing all the data. If I have not yet given you a call, I may be in touch soon to double check things if needed.

We are learning SO MUCH from young people and their families. If you would like to share something that was not asked in the questionnaire, or have another thought prompted by the questionnaire, please let me know and I’ll include it in the data.

July school holiday finish

Thank you to all who have completed the questionnaire!!! If you have not yet completed your questionnaire, and would like some help, text 0415 301 635 and we can finish it together over the phone.

We will end questionnaire collection after the July school holidays.

We are learning very valuable insights from young people with NMD and their families. We’ll be able to share the combined data by end 2016. Here is the June 13th 2016 picture showing the count of 14-21 year olds involved in this study.

MLMV Numbers June 14th 2016


e-mail glitch – connected again

Hi to all interested and participating young people,

The e-mail address is back in action. We had a blip between 2nd- 20th May 2016. If you sent an e-mail to this address during this time, please can you re-send your message, or send an sms to 0415 301 635 if you’d like to check that your mail was received.

Big thanks! Vivienne and team

QLD Recruitment – this is it!

Thank you to the team at Lady Cilento Children’s Hospital for sending out flyers on Monday 4th April. We look forward to hearing from all young people in QLD who are not yet part of this study 🙂

Let us know your interest by e-mailing or sending a text “I’m interested” to 0415 301 635.

Thank you to all the amazingly wonderful young people and families who have returned questionnaires. A massive team effort ! Step-by-step we are  collating and comparing results to many other teenagers. We hope to let you know the bigger picture by the end of this year.

Here is the counter to date – 10th April 2016.

MLMV Numbers April2016 (2)