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The latest news from DEBRA Australia
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October 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.
 

International EB Awareness Week 2014

25th - 31st October


International EB Awareness week, which occurs in the final week of October each year is on again soon. The week long campaign is orchestrated by all the DEBRA organisations around the world to help raise awareness of EB in our communities and raise funds to help those who suffer from the condition. During the week we ask for you to take part in supporting DEBRA Australia by doing what you can to help raise awareness for EB. This may be anything from writing a letter to your local members of Government and Local Newspapers or even taking part in DEBRA Australia's Dine & Donate campaign.

Dine & Donate for DEBRA Australia


As part of EB Awareness Week 2014, DEBRA Australia will be hosting a Dine & Donate Campaign to help raise awareness and funds. Whether it is a 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 Australia. All you need to do is host an event, ask your guests for a donation and enjoy bringing everyone together for a fantastic cause.

We can help with some fundraising ideas and we have plenty of merchandise for sale so let us know if we can send out a few things to help boost donations. So, what are you waiting for? Register your event on the DEBRA Australia website and we will send out a free Dine and Donate starter kit. 

The kit includes printable invitation flyers, promotional material, a tea towel designed by the children in Australia with EB and much more. Make sure you get in quick, as the starter packs are limited. Click here to register your dine and donate campaign.

Art Union



DEBRA Australia is also pleased to announce that we are 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.

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

EBCC 2015 Update



Plans for the next EB Cross Country Ride are well on track.  The 2 week motor bike adventure ride will start in Alice Springs, take in the sights of The Kimberly and finish up at Alice Springs taking in some of the sights of the Finke Desert Race.  Limited places are nearly booked out so if want to register please get in quick before you lose the chance!
 
A big thanks to the team of volunteers who gave up their time and resources to complete the survey and work out logistics.  There were long kilometres, lots of wide open spaces, and challenging times accessing fuel.
Steve and Craig stopped to chat to a friendly traveller who was doing a two week trek walking from Derby on the Gibb River Road.
Craig, Vanessa & Steve taking in the scenery at one of the lookouts and catching up with some of the locals. 
 

DEBRA Australia Board

The annual DEBRA Australia planning session was held in Sydney in September to work on short and long term strategic planning. The Board consists of 50% family members and 50% mentors who all volunteer their time, skills and passion to oversee DEBRA Australia.
From left: Mary (NSW – family member), Shay (QLD - mentor), Melinda (VIC – family member), Jenny (NSW - mentor), Samantha (QLD - mentor), Donna (VIC – family member), Zlatko (SA - mentor), Michael (NSW – family member). Absent from photo: Karen (SA – family member) and John (NSW – mentor)

Family Support Program

Family Support Coordinator Simone has been kept very busy with family and EB Clinic visits.  Purchases of air conditioners, bed, mobility equipment and other medical supplies have also been made to help support families.
 
The Family Support Program has now been in place for over a year and as more awareness is created the database is steadily growing.  Funding received from the Cotton Ball held in Melbourne on a biennial basis has been critical for the success of the program. Funds received from the Eliza Braitling Foundation and other generous donations also help keep the program going.
 
A new initiative being introduced this year is the Parent’s Respite Program, which has come about from funding received from The Protectors Insurance Brokers golf day held in Sydney. A Sibling Program is also being implemented to help support those children living with a brother or sister with severe EB.  If you would like any more information on the programs in place please contact our Family Support coordinator on 0413 967 609 or via email ebfamilysupport@debra.org.au
Dean in Brisbane with his new scooter and air conditioner, funded by DEBRA Australia Family Support Program

In Home EB Nurse Program

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. Most families involved in this care have found benefits in having some respite and additional support. The Little Heroes Foundation are now in a position to fund more of our DEBRA families who are living with the daily challenges of severe EB.  

The program offers  “In Home Nursing Support” which includes a registered nurse for 2 visits per week / 3 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. This program focuses on support within the family home in aim to relieve the stress and on-going, high demand of EB care. 

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

New Pain Management Guidelines for EB

DEBRA International has now published new Pain Management Guidelines which are available to the public and can be found on the DEBRA International Website. Click here to head to the site and read the new guidelines.

A huge thanks to Kenneth Goldschneider and the panel of experts involved, to DEBRA of America for funding and support and the dedicated best practice team at DEBRA International for all their work.

Thank you to our supporters


Holy Trinity Opportunity Shop Donation
Big thank you to the Holy Trinity Opportunity Shop for their lovely $2,000 donotion. 

Wheelers Secondary College School Donation
Caitlyn and Bosma from Wheelers Secondary College School Representative Council held a free dress day to raise funds for DEBRA Australia. As a result $742.40 has been donated to support families living with EB.  A big thank you to the organisers and students of Wheelers Secondary College!


Bosma, Caitlyn and Eliza from Wheelers Hill Secondary College.

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.

Upcoming Events

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

Dine & Donate / EB Awareness Week
25th - 31st October 2014

SA Quiz Night and Art Auction
8th November 2014
Contact Laraine for more information:
lararich@adam.com.au

Melbourne Market Charity Golf Day
14th November 2014

SA Dinner Dance
12th December 2014
Contact Laraine for more information:
lararich@adam.com.au

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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