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The latest news from DEBRA Australia
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December 2014

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EB is a rare genetic skin blistering condition which leads to a life of pain and disability. Skin can peel at the slightest touch, this is why we call the children the “butterfly children” as their skin is as fragile as a butterfly’s wings. Living with EB is likened to living with third degree burns that never heal, it is very painful and children are required to be bandaged everyday to protect and medicate their wounds.

DEBRA Australia raises funds and awareness to support families living with EB to help make a difference.
 

Merry Christmas from DEBRA Australia


On behalf of everyone here at DEBRA Australia we wish everyone a very Merry Christmas and Happy Holidays. Thank you to all the sponsors for helping make a difference for families living in Australia with EB.

Will The Real Father Christmas Please Stand Up



A long-time supporter of DEBRA in SA, Roger S. Trevor, has launched his new book, “Will The Real Father Christmas Please Stand Up”.  Thanks Roger for sharing your story and for your years of dedication to DEBRA.  This would make a great Christmas present, check it out at www.fatherchristmasisreal.com.

New National DEBRA Australia Ambassador

Tasma meeting up with one of the DEBRA families in Perth
Welcome to our new DEBRA Australia Ambassador Tasma Walton. Tasma has been busy over the last few months appearing on The Project and The Morning Show as well as met up with one of the DEBRA families in Perth.

EB Awareness Week 2014 - Dine & Donate for DEBRA



A big thank you to all who got involved and held a Dine & Donate event for DEBRA Australia. The total so far is nearly $6,500 with some more events still to be held. Here are the events held so far:
Mary & Kylie in Sydney raised $1,235.50 getting together for an afternoon with friends and family.

Pictured: Mary, Kylie and Thelma.
Kelly in Brisbane held a high tea with friends and raised $1,050.

Pictured: Kelly and friends.
Shannon held a morning tea at her workplace Transportable Sheds Landsborough and Kindermarlee Day Care to raise $262.

Pictured: Transportable Sheds Landsborough.
Pictured: DEBRA information displayed at Kindermarlee Day Care.
Jane in Young held a Melbourne Cup Day function and raised $501

Pictured: Jane and friends on Melbourne Cup Day
Pictured: Jane with one of the raffle prizes.
Toowoomba Private Emergency Group (TPEG) raffled a lovely handmade quilt made by Penny. Over $800 has been raised by TPEG staff throughout the year. 

Pictured: Kate, Pru and Penny with first prize.
Baxter Healthcare raised $1,091 from staff donations challenging Josh to shave off his curly locks….big thanks to Christine for organising the event, Josh and all the staff and management at Baxter Healthcare in Brisbane. 
Pictured: Josh, before and after.
  • Fridays Drinks Girls from Toowoomba raised $1362.52 holding their monthly get together. Thanks to Lizzie and Anne for organising this event.
  • Rosie from John Hunter Hospital in Newcastle got together with nurses and friends and raised $150 by selling t-towels and some donations.

DEBRA Australia Art Union



DEBRA Australia is holding an Art Union Raffle to win $25,000 worth of vouchers towards a Mitsubishi Car, Motorcycle or a Holiday! Tickets are available for purchase from the website, follow the link below to see all the details and to get your ticket to go into the draw. Tickets are $100 each and there will only be 1,000 tickets sold. Click here to purchase your tickets. This could be the perfect gift to give to someone for Christmas.

If you would like to sell tickets on behalf of DEBRA Australia contact us at admin@debra.org.au.

Family Support Program


The Family Support committee has been very busy assisting DEBRA families with various grants over the past few months. These have included nursing support for parent respite, air conditioners, food blenders, electric scooters, medical supplies & domestic support. Family Support coordinator Simone has also attended EB clinics in Melbourne, Adelaide, Sydney & Brisbane where she met our newest & youngest EB baby. Lachlan was born in November 2014 & lives in Yepoon QLD with his parents Campbell & Michelle. They visited Brisbane EB clinic for the first time last month and they look forward to meeting other EB families at the DEBRA Family camp next year in September 2015.

If you have any enquiries about the Family Support, Parent Respite or the Sibling Support program please contact our Family Support Coordinator - Simone on 0413 967 609 or via email ebfamilysupport@debra.org.au 
Campbell, Michelle and baby Lachlan.
Dean in QLD on his new scooter.

Mum's "Time Out"


Mum’s from all over Australia met up for three days away at Port Douglas to have some time out from EB.  All mother’s were carers for their children living with severe EB and from the positive feedback, appreciated the opportunity to network with other Mum’s and just have the much needed time out.  This was all made possible by the lovely donation from TP Insurance Brokers P/L in Sydney who supported the Family Support Program this year after their charity golf day along with some support from the Eliza Braitling Foundation.
Some of the Mum’s who attended “Time Out”

Open Door Real Estate



A great night was had by all at the Open Door Real Estate Quiz Night and Art Auction.  Over $5,000 was raised. A big thank you to Open Door Real Estate, donors and Kate as guest speaker on the night. 
Guest speaker on the night Kate from Victor Harbor.
Quiz buffs supporting DEBRA Australia research.

Support from Beacon Hills College



Simone attended a presentation at the Beacon Hills College to meet with the teachers and students who have been raising $742.40 and awareness to support families living with EB.

In Home Nurse Programme


Over the last two years the “Little Heroes Foundation” in partnership with DEBRA Australia have been funding the in home nursing support program for our most severe EB individuals nationally. We are pleased to announce that the findings on the benefits of the in home nursing programme have now been published in the prestigious International Wound Journal. We wish to thank all the families and community nurses that participated in the surveys and everyone involved in running this programme. We plan to use this publication as a tool to lobby for government support of community nursing for EB. If you would like to read the details of the manuscript click here.

The Little Heroes Foundation is now in a position to fund more of our DEBRA families. The program offers “In Home Nursing Support” which includes a registered nurse for two visits per week for three hour sessions, who will provide direct wound care, bath and dressing changes. To be eligible for this support, individuals with EB must be under the age of 26. If you are interested in gaining support from this program, please contact our Family Support coordinator on 0413 967 609 or via email ebfamilysupport@debra.org.au.

Follow Your Dreams 2014


Bianca from Melbourne fulfilled her dream of swimming with the dolphins. Thanks to the annual Follow Your Dreams grant in memory of Carmel Harris for granting this wish.  Applications for the Follow Your Dreams close end of January, click here to the complete the application. 
Melinda and Bianca at Sea World.

Melbourne Markets Golf Day Fundraiser


The Melbourne Markets Golf Day fundraiser was a great success thanks to a dedicated team of volunteers who make it all happen. There were 88 golf players on the day that along with businesses, sponsors and the Kingston Links Golf Course raised $25,440.
Left to Right: Mick Scro (Melbourne Lions), Joe Amalfi (Fresh State), 
Simone Baird (DEBRA Family Support Coordinator), Corinne Said (Melbourne Market Association), Sally Piper (Fresh State), Mathew Elliot (Melbourne Market Association), Patrick Gale (Melbourne Lions).
 

EBCC 2015 Update



Only two spots left on the EB Cross Country ride.  If you don’t want to miss out go to EBCC page for more information.  

Clinical study of natural wound healing in Dystrophic Epidermolysis Bullosa

 
Professor Dedee Murrell from Sydney, has secured a spot as a study site in Australia for a clinical study of wound healing in Dystrophic Epidermolysis Bullosa.  

This new observational study is funded by the biopharmaceuticals company, Shire, which makes medications for rare disabling genetic conditions similar to Epidermolysis Bullosa. The aims of the study are to monitor how wounds in patients with Dystrophic Epidermolysis Bullosa change over time by using both 2D and 3D photography and to test which scoring methods are best for wound healing studies in EB. This is an observational study, and no investigational drug use is being used in this study. 

This new study will take place at Professor Dedee Murrell’s private practice in Sydney, Australia. Each participant is asked to present for three visits, two weeks apart over a month period and participate in a follow up phone call one week after the last visit. The visits will be held on Wednesday mornings and are expected to take about three to four hours from 8.30am onwards, and do not require any new blood tests or biopsies. Copies of historical test results and medical records are needed for this study. 

The study includes participants with either Recessive Dystrophic Epidermolysis Bullosa or Dominant Dystrophic Epidermolysis Bullosa of any age. There are strict criteria that the participant has to have at least five active wounds and NO current evidence of squamous cell cancers. Reasonable travel expenses will be provided for the travel required for the study for the participant and care giver. 

Please contact Professor Dedee Murrell’s fellow, Dr Adam Harris, if interested, on adamgeorgeharris@gmail.com or nurse Charmaine on (02) 9598 5800.
 

The Cotton Ball 2015

Tickets are selling fast for the The Cotton Ball 2015, being held at the Melbourne Convention and Exhibition Center on 14th March 2015. Click here to head to the website and grab your tickets today.

National EB Camp 2015


Registrations for the 2015 EB Camp will be opening up in February. Make sure you set aside the 11th - 13th of September 2015 so you can attend.

Upcoming Events

 
Click on the events or contact us at admin@debra.org.au for more information about any of the following events.

Tough Tilly Day
3rd January 2015

Brighter Days
7th March 2015

The Cotton Ball
14th March 2015

EB Cross Country 2015
24th May - 7th June 2015

National EB Camp
11th - 13th September 2015

EB Health Professionals Conference
11th September 2015
The printing of DEBRA News is kindly donated by Nu Skin.

 
 
 
 
Copyright © 2014 DEBRA Australia, All rights reserved.



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