DEBRA Australia News
December 2013

What a Year!

This year has been a very busy year with a lot being  achieved, in particular the transitioning of DEBRA Australia Inc over to the new entity and the introduction of new programs.  It was all made possible with the support of the State organisations, volunteers and many wonderful fundraisers.  We would like to thank all of our supporters, volunteer and staff for getting DEBRA through this busy period and here are some of the highlights:
  • Introduction of the new EB Nurse position at Melbourne Royal Children’s Hospital.
  • A national In Home EB Nurse program thanks to Little Heroes Foundation.
  • New EB Family Support Program all made possible by the generous donations from the Cotton Ball – A big thanks!
  • Increased staff resources with Simone Baird now our new Family Support Program Coordinator and Sue McKenna taking on further hours as our Administrator / Coordinator.  
  • Lisa finally got to follow her 2012 dream of a great girl’s week away in Sydney and Milad also followed his dream of attending a Liverpool Soccer game in Melbourne with his family.
  • Inaugural EB Cross Country Adventure Ride travelled a loop around QLD on off road motorbikes with a support crew to raise funds and awareness for DEBRA and EB.
  • New Dine & Donate for DEBRA events launched in conjunction with International EB Awareness Week in October.
  • New Research program and travel fellowship granted to support national and international researchers. The travel fellowship grant has also enabled Samantha Hay the EB Nurse in Brisbane to undertake advanced EB Nurse training in the UK. 
  • Representative attended the DEBRA International Conference in Rome to foster ongoing relationships with other DEBRA groups globally.
  • There are now 100 patients on the EB Dressing Scheme.
We wish you all a Merry Christmas & all the best for the New Year! 


Thank you to the private donors for your lovely donations made over the last few months and also the following donations from organisations and businesses:
  • Orara High School - $1,400
  • Heathcote Public School and P & C - $659 donation in memory of Josh Gibson.
  • Toombul Bowls Club, QLD - $400
  • JM & LM Investments - $500 to support teleconference expenses.
  • Holy Trinity Op Shop, Pascoe Vale, VIC  - $2,000
  • Long Reef Golf Club, NSW - $3,487.50
  • DEBRA SA - $1,040 movie night and $2,865.60 at the Recycled Fashion Fundraiser.

EB Nurse Program Update
A new EB Nurse, Lauren Weston, has been recruited for the Melbourne Royal Children’s Hospital and we welcome her wholeheartedly.

Lauren, the new EB Nurse in Melbourne.
Sam Hay continues to do a great job in Brisbane at the Royal Children’s Hospital. Sam attended an EB Training Course in the UK in December which was supported by a DEBRA Australia Travel Fellowship. Sam also attended the Paediatric Scientific Annual Meeting and created awareness for DEBRA and the EB Nurse Program.

Sam at the Paediatric Scientific Annual Meeting.

For more information about the EB Nurse Program and contact details please visit the EB Nurse Program via the website.
Raising funds for DEBRA in SA

Kate and David (Manager of Victa Cinemas)
Movie night was a great success which raised $1,040 on the night.  All enjoyed the movie, Captain Phillips and supper.

Dine & Donate

Kelly and her friends held a Dine & Donate function and raised over $650. A big thank you to Kelly and everyone who held a special event for Dine & Donate.

Op Shop Fundraiser

Kate and Linda going through the bargains
Recycled Fashion Fundraiser organised by our wonderful supporter Cinzia in South Australia and her family and friends, making $2,865.60 on the night. Entertainment included a Belly Dancer, singer and Psychic readings as guests browsed through the bargains. A fabulous evening of fun and "Op shopping" in style. 
Applications Closing Soon
Follow Your Dreams grant applications closing 31st January 2014.  Visit the DEBRA website for an application form.
EB Cross Country Ride 2014

The EB Cross Country Adventure Ride is on again soon. EBCC is a fun packed 10 day event on motorbikes to raise funds for the EB Family Support Program.  If interested please visit the EBCC page on the website. 
Tuff Tilly Day
It’s on again! January 4, 2014 will be a big day for Echuca and everyone attending this fun and exciting event. All proceeds raised will contribute to the final tally of the 2015 Cotton Ball. The event is well underway with Ricky Robertson and Rory Brockwell busily seeking auction items.  It will be held at the American Hotel Echuca and 600 hundred people are expected to attend. Tickets are still available for anyone who is interested and they can be bought on line or on the day of the event, so come along and have some fun. If it’s anything like last year, it will be a great day!
To book your tickets click here

The printing of DEBRA News is kindly donated by Nu Skin.


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