Website is Proudly Sponsored by Pharmalink
DebRA Butterfly Day

DEBRA Australia News

 

Research News

Follow Your Dreams


 
 


S80 State Championships

From the 10th - 12th of January 2014, Chris Byrne from Melbourne, did an amazing job in creating awareness for DEBRA Australia by competing in the S80 Yacht Racing State Championship with his yacht's spinnaker emblazoned with the DEBRA logo. Here are some photos from the event.

During the event he also had posters pinned up in the yacht club and handed out flyers to everyone, making sure that everyone was aware of DEBRA Australia and what we do. 

We would like to thank Chris and everyone else that was involved for spreading the awareness of DEBRA during the event and congratulations in placing 7th during the race!

   

Tough Tilly Day - 04.01.2014 

On Saturday the 4th of January was Tough Tilly Day, an annual fundraiser for DEBRA held in country Victoria. This fundraiser was initiated by the Wilkes family in Melbourne who have a 3 year old daughter with EB named Tilly. The day started at 10am in Moama, NSW at the Border Inn Hotel. Close to 600 people started the walk at 11am across the border into Victoria. It was an army of grey Tough Tilly singlet’s walking together and eventually lead to the American Hotel, Echuca. 

Austin Powers and Elvis entertained us along with several singing personalities made it for a fun day for all. The weather was perfect, the food was great and people opened their hearts and wallets and gave generously. We would like to thank Ricky Roberston & Rory Brockwell for coordinating the event and everyone who was involved and supported Tough Tilly Day and hope to see you there again next year.

 

 

  

 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.

 EB Nurse Update

We were sorry to hear that Leigh Fitzsimons, our the 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.

 DEBRA Donations

Thanks to the following organisations who have donated to DEBRA over the past few months.

DEBRA SA Quiz Night- $2698.45
Credit Union Lottery - $150
Bluestar Printing -  $1209
BHP (via EB Cross Country Adventure Ride) - $600

 Travel Fellowship: Second Round Applications Now Open

Up to $6,000 is available annually for the Travel Fellowship (approximately $3,000 for each round of awards). The second round of applications are now being called, with the deadline of 30 September 2013. The maximum amount that will be awarded to an individual for travel in Australia or New Zealand will be $750 and the maximum for travel to other overseas locations will be $2,500. The Fellowship may be used for costs of flights, accommodation, or meeting registration. The number and mix of Fellowships awarded in each round may be varied at the discretion of DEBRA Australia's Board of Directors, depending on the applications received. However it is expected that at least one award in each round will be made to a nurse involved in EB care.

 

Potential applicants should consult the Application Guidelines, Terms and Conditions and please contact secretary@debra.org.au for more information on the research grant or travel fellowship.

 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.

 DEBRA Research Grant - Apply Now

DEBRA Australia is pleased to call for applications for new research funding for projects aimed at improving the health and wellbeing of children and adults with Epidermolysis Bullosa (EB), in any of DEBRA's priority research areas. Funds of up to AUD $15,000 over 1 year are available for this grant. The deadline for application submission is 11 October 2013.

DEBRA's Research Priorities are:
• Development of therapies, including possible gene-therapies, cell-therapies, drug therapies or protein therapies;
• Wound healing and skin cancer in EB;
• Clinical research to improve management of EB through symptom relief.
• Biology and genetics of all forms of EB, where it can be shown that this may help lead to new approaches to treat EB.

Application Format & Submission

DEBRA GUIDELINES FOR APPLICANTS 2013
Applicants are strongly encouraged to study these guidelines, terms and conditions carefully before preparing their application.

Applications shall follow DEBRA Australia’s application format, using the form available here.

 New 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.

If the committee can assist you with any family support needs please lodge an application form via Sue secretary@debra.org.au or Simone (Family Support Program Coordinator) ebfamilysupport@debra.org.au on or after July 1.

 EB Care Registry

If you haven’t already registered your details on the EB Care Registry, please do so.  We are all set up to help you get started so please either call your state representative or call Sue on 07 46 937 003 so we can help you get your details on the registry.  You can read more about the registry here.

 In-Home Nurse Program

Our in-home nursing care program, supported by the Little Heroes Foundation, continues to flourish, with 12 families across 3 states currently being supported for dressing changes. The cost of this program is over $150,000 per year, and we are extremely grateful to the 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.

Little Heroes Foundation Logo

 Qld Meet & Greet

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

International EB Awareness Week

Afternoon Tea for DEBRA

Dine or 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.everydayhero.com.au/event/debradonation . For further information contact Sue on 07 46 937 003 or secretary@debra.org.au .

 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.”  Ashley Thompson

Pictured right: Ashley’s son, Will, with his prized jersey autographed by Kevin Sheedy. 

 Follow Your Dreams Grant 2013 

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.

Pictured right;  Milad cheering on Liverppool FC at the MCG 

 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!

 DEBRA SA Quiz Night & Credit Union Lottery Donations

Thanks to the organiser and attendees of the DEBRA SA Quiz Night which raised over $2600 for DEBRA.

The Credit Union Lottery also raised $150 for DEBRA which was another wonderful donation.

 

 

 National EB Dressing Scheme Update

It gives us great pleasure to be able to share with you some exciting news and changes regarding the National Epidermolysis Bullosa Dressing Scheme (NEBDS) in Australia that took effect from 1st October 2012.

      >  The Dept of Health and Ageing and the Federal Minister for health have confirmed that the scheme will continue to be funded into the future past the current funding end date of Dec 2013. This scheme is not subject to an end date for funding any longer.

     >  All age restrictions around Simplex Types will be removed allowing ongoing access to dressings for all eligible EB patients in Australia regardless of age and type.

These changes mean that many more people will now be able to apply to access the scheme subject to meeting the eligibility, co-payment and ongoing review requirements. This also means that less re- testing around inconclusive results will be required if the sub type is unclear. 

This is a major milestone for the scheme in Australia and would not have been possible without the support of all those over the years who have provided information about how a fair and equitable scheme for EB patients in Australia could be done. This involved many families, medical professionals, industry, politicians and the community working together to make this a reality in the spirit of cooperation and in a team approach for a number of years. I would like to thank each and every person who has provided information, opinion, input and support for the scheme to date and making it an ongoing reality.

The Dept, BrightSky Australia and DEBRA Australia are all working hard to ensure all relevant information is updated and will be available and communicated in full shortly.

 EB Cross Country Adventure Ride 2013 Wrap Up

 EB Cross Country Adventure Ride 2013