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DEBRA Australia News
September 2013
 
A Day at the MCG
After hearing about the success of The Cotton Ball in March of this year, AFL coaching legend, Kevin Sheedy donated a day in the coach’s box at the Melbourne Cricket Ground (MCG) for auction, with proceeds going to DEBRA Australia. On Saturday 27 July Ashley Thompson, the winning bidder, was treated to a once in a lifetime experience, accompanying “Sheeds” onto the MCG and into the Box for the duration of the game.  “The fact that it was Kevin’s last ever game at the MCG as coach or player makes it even more special”, said Ashley, “and my son, Will, loves the souvenir signed jumper. It was a fantastic day and the money is going to a fantastic cause.” 
 
 
Pictured: Ashley’s son, Will, with his prized jersey autographed by Kevin Sheedy

Follow Your Dreams Football Game in Melbourne July 23
The recipient of our Follow Your Dreams grant for 2013, you may remember, was Milad.  His dream was to go to the Liverpool FC live match in Melbourne in July.  Well he made it, after a rocky start, and he has some photos to share with us all.  

Unfortunately, Milad had a pretty bad eye the morning of the flight, but he and his family made it onto the plane and into Melbourne.  By that evening, the night of the soccer match, Milad’s eye was a bit better and as soon as the match started Milad was chanting his team’s songs and having the time of his life. Somehow Milad managed to watch the entire match even with his eye playing up.
 
Milad and his family had lots of fun regardless of all the crazy circumstances, and it just goes to show us at DEBRA just how resilient our members are.  Even in the face of adversity and hardship, they still manage to enjoy life and make the most of what they are dealt.  Amazing!


 
Thanks Milad for your photos and we hope you enjoyed your trip. 

Toowoomba St Vincent’s Staff Raising Funds for DEBRA
Staff at Toowoomba St Vincent’s Emergency Department has adopted DEBRA as their chosen charity to raise funds for over the next 12 months. Staff members proudly wear the DEBRA logo once a week to work to help raise awareness for DEBRA.


EBCC 2014 Ride & Photo Comp Winner
Congratulations to Brad Taylor, who took this winning photo for 2013 EB Cross Country Adventure Ride photo competition.  The winning shot is of Luke & Smithy at the Jundah – Longreach turnoff.  Brad won a BIGDOG socket set, kindly donated by Adam Plush.  We’re sure you’ll all agree it is an amazing photograph which really captured the atmosphere of the ride.


We are already talking about the 2014 ride, tweaking bits and pieces from this year’s ride based on feedback from the riders.  The 2014 ride will be known as “Villains and Vineyards”, and is bound to be exciting, challenging and of course, entertaining!  At this stage the route will run from Adora Downs > Tenterfield > Glen Innes > Bellingen > Macksville > Hunter Valley.  Amazing right?  We’ll keep you posted as we lock in further details, so stay tuned, and ‘Like’ the EB Cross-Country Adventure Ride Facebook page for regular updates.

EB Nurses
We were sorry to hear that Leigh Fitzsimons, our new EB nurse at The Royal Children’s Hospital Melbourne,  will be leaving early in September for personal reasons, as she will be relocating to Perth. Thank you Leigh for all your hard work in the few months you have been in the dedicated EB role! The Hospital is working on recruitment of a replacement and we hope to have some good news shortly.

Sam Hay, our EB nurse in Brisbane, continues to provide excellent support for Queensland families. A few months ago she was involved in a videoconference clinic with two rural families. This was an interesting experience and Sam has some good ideas for improvements next time round, so that maximum benefit can be gained from these link-ups.  Families based in rural and regional areas may like to explore the possibilities for teleconferencing with their own health care advisors. Sam can be contacted if they would like some insights about how best to organise this type of activity - she can advise what works and what doesn’t.




Meet and Greet QLD
Some of the lovely families we met in Queensland recently are pictured here with Sue, Simone and Sam from DEBRA.

Family Support Program
Our coordinator of the Family Support Program, Simone Baird, has provided a summary of what has been achieved for DEBRA families since May 2013.  A total of 11 applications have been received for support, with most of the support provided being for medical supplies.  
 
Majority of the applications received have been funded, and a total of 10 families are currently receiving support to gain government and community services.  Please contact Simone Baird on ebfamilysupport@debra.org.au for details on how the program may be able to offer support to your family.

DEBRA Memberships Due
A friendly reminder that DEBRA membership fees are now due. Please email secretary@debra.org.au to receive a current membership form.  Thank you for your ongoing support!

In-Home Nursing Care Program
 

 
Our in-home nursing care program, supported by Little Heroes Foundation, continues to flourish, with 13 families across 5 states currently being supported for dressing changes. The cost of this program is over $150,000 per year, and we are extremely grateful to Little Heroes Foundation for their ongoing support. The Foundation has a specific charter to fund the needs of children. We will need to continue to fund-raise to enable us to extend this program to adults with severe EB.

EB Awareness Week: 
25th - 31st October 2013 
Dine & Donate
Whether it is a humble BBQ, a high tea, breakfast or dinner party EB Awareness Week is the ideal opportunity to get your family and friends together to help raise much needed funds for DEBRA.  Simply organise an event, request a donation fee from your guests and ask those who can’t attend to make an online donation to DEBRA at 
www.debra.org.au. 
 
For further information contact Sue on 07 46 937 003 or 
secretary@debra.org.au.

DEBRA AGM
The 2013 DEBRA Australia Ltd AGM is scheduled for 27th October, starting at 12 midday.  It is being held at the Planning Session in Sydney and will be accessible via teleconference facilities. Please contact secretary@debra.org.au for all the details if you’d like to join the meeting.

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