Category Archives: Uncategorized

Enjoy the Summer Holiday!

Hoping you enjoyed a festive December and a good start to a great, new 2016!

We look forward to being in contact in the slightly quieter month of January.

Best wishes for some restful down-time this summer holiday 🙂

First visit to this site?

Thank you to the Duchenne Foundation team, and to all the teams at the Sydney Children’s Hospital, Children’s Hospital Westmead and Royal North Shore Hospital for sending out information flyers  across Australia and NSW.

If you’re keen to connect or would like more information from the study coordinator, you can sms “I’m interested” to 0415 301 635.

Taking part:

“It was a fun survey and () really enjoyed getting his own voucher. Thanks again.” South Australia – 14year old

If you’re keen to also be a part of this study, sms “i’m interested” to 0415 301 635.

THANK YOU to all helping with this research

Here are our numbers to date. We are extending recruitment. Thank you to all who are part of the MyLifeMyVoice research already. It is truly a massive team effort!

MLMV Numbers Dec2015

Autumn 2015

Hi! Welcome all new visitors.

We’ve just sent out information flyers to 14-19 year old teenagers via Princess Margaret Hospital for Children, Perth and the Women’s and Children’s Hospital, Adelaide.

We’re hearing young peoples’ voice in research. Teenagers in this study are describing life with a neuromuscular condition (NMD). Teenagers and young adults are also talking about their thoughts of health, wellbeing and learning to get ready for adulthood.

If you’d like more information about this study, e-mail Vivienne directly on mylifemyvoice@nd.edu.au, ring or sms on +61 415 301 635.

Easter 2015

THANK YOU to all teenagers who’ve completed the questionnaires over the Summer and start of Term! We hope the first quarter of the year has gone well for all.. We’ve had some really good discussion, learnt heaps, made new connections amongst teens with similar experiences, and received gift vouchers 🙂 . The blog counter  is updated so you can see who’s taking part.

Have a fantastic run up to Easter and all the April activities, including MD camps across the country (SA, VIC, NSW and QLD), Duke of Ed Awards (WA, SA , NSW),  ANN and MD NZ Conference and good luck to all at the National Electric Wheelchair Sports games in Sydney!

If you’d like to be a part of or help out with this research, please e-mail mylifemyvoice@nd.edu.au.

Summer 2015

Welcome to all new MyLifeMyVoice research participants, and to teenagers and families receiving the information via MDNSW and MDQLD. Thank you to Loretta and Susan for passing on the info!

We hope you’ve been having really good summer holidays with family and friends. We’ve also enjoyed a bit of ‘down-time’ with our families to start off 2015  and are looking forward to a good year ahead.

We’ll be recruiting well into the latter part of this year. Have a browse of the “About taking part” pages to see who’s already connected with this research. Contact mylifemyvoice@nd.edu.au if you’d like to join.

Best wishes for the start of school, uni and post-school in the next weeks!

Vivienne

Merry Christmas

Wishing all participants a Merry Christmas and a fun start to a very good new 2015.

Thank for the massive team effort to date. Lots to look forward to in 2015!

A few more links have been added to the links pages for browsing and reading.

With very best wishes, Vivienne & team

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 mylifemyvoice@nd.edu.au.