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The latest news from DEBRA Australia.
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Epidermolysis Bullosa (EB) is a rare genetic skin blistering condition that 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 every day to protect and medicate their wounds.

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

December 2015

Merry Christmas

Wishing you a Merry Christmas from everyone at DEBRA Australia.  We hope you enjoy a fun and safe holiday.  To all our supporters this year we cannot thank you enough. All the best to you all for the New Year and we look forward to continuing our contact with you in 2016.

Family Support Program Update

The Family Support Committee has been busy working with families in a variety of ways from different States. Thanks to the Little Heroes Program, we have another family in Northern NSW being supported by the In Home Nursing Service. We appreciate the on-going and regular support Little Heroes provides to our families and look forward to continuing to work closely with them in 2016.
Youngcare also continues to help young adults living with EB live at home and recently funded an air-conditioner for a family in NSW.
Many of our families also received Christmas Hampers generously donated by NSW Pastor, Brenden Brown. Brenden and his two young children suffer from SEB and know the daily challenges of living with this condition. This is the second year Brenden (and the Hillsong Church) have supported our families with generous gifts at Christmas time. We thank Brenden for his continued support.

Tilly Wilkes and her family recently spent one week holidaying on the Gold Coast. The Family Support Program arranged a special “Meet the Dolphin” experience for Tilly which she thoroughly enjoyed. 

If you have any enquiries about the Family Support program, carer respite and sibling support please contact our Family Support Co-ordinator, Simone on 0413 967 609 or via email ebfamilysupport@debra.org.au

The Family Support committee would like to wish all our families, members and supporters a Merry Christmas and a happy and safe New Year. We look forward to working with you in 2016. 
Wilkes family at Sea World Gold Coast meeting the dolphins.

Follow Your Dreams 2015

Article by Vanessa Manzano

I was the lucky recipient of the DEBRA Australia Follow Yours Dreams Grant for 2015. I cannot thank everyone involved enough for this wonderful opportunity. Although things did not exactly work out as planned this was an amazing experience that I will never forget.

I arrived at Hayman Island on 23rd November for a five night stay. The photos don’t lie – the water really does have those gorgeous shades of aquamarine and turquoise! The photos simply can’t capture the true colour as the eye can see.

While unfortunately I managed to get a sore eye very early in the vacation, what I did manage to see was glorious. My sore eye did not stop me from enjoying the delicious food, and an invigorating reflexology session. I think I floated back to the room afterwards. I had been hoping to enjoy my first facial, but was unable by then to contemplate having anywhere near my eye touched, so that experience will be in my New Year list of goals.

When emailing the General Manager, Ed Brea, to praise and thank the high quality team working there, and some specific staff members who went above and beyond normal expectations of customer service, he was thrilled to receive the praise of his staff. On discovering the background for my stay and realising I never made it for that long awaited swim in the ocean, he arranged a complimentary return stay voucher for two people, including breakfast and luxury yacht transfers. Since the original email the invitation has now been extended to include both of my children as well.  They are so excited!!

I have never heard of such a kind and generous offer before. He could have simply said he was sorry to hear what happened and hope I may return one day, but at “One & Only Hayman Island” going above and beyond seems to be the norm for them.

I am very grateful to the resort manager Ed Brea and his exceptional staff, for allowing me this opportunity. If you are considering an Island holiday I would definitely recommend Hayman Island, it’s heaven!! I have also included a copy of two emails that I hope you will read. I really wanted to share with you all this “feel good” story.

Also, a big thank you to Simone from DEBRA, for her assistance in organising this holiday and the phone calls, to assist with Hayman Island providing the necessary requirements for my bath, which certainly made packing easier for me.
I would like to say a huge thank you to Simone and Sue and all the DEBRA committee/board for all the support I have received since the passing of my mother last July. It was an incredibly rough time and without that support I would not have coped. It made the world of difference to my children and I and I am so grateful. Merry Christmas to all of you!

With thanks - Vanessa Manzano

The Follow Your Dreams grant was made possible this year due to additional support from the new Kate Turner Fund.

Future Generations Investment Fund

An amazing $82.283.80 donation has been made by the new Future Generations Investment Fund.  The fund was set up to support charities and that is exactly what it has been doing! If you would like more information on the fund click here.

The concept of the fund originated when a very special baby called Eliza was born in Sydney. This is Eliza and her family’s story…

Our beautiful baby girl Eliza Akaroa Braitling was born two years ago this November. She passed away the following February from Junctional Herlitz EB, she was barely 12 weeks old. We felt so blessed to have Eliza, she was the sweetest and bravest little baby and she came to change our lives forever in her short, precious time with us.
 
We bared witness to the struggle she endured every day. Hers was an excruciating existence. Our baby knew pain beyond what we could possibly comprehend. 
Heartbroken in our helplessness as parents to save our child we made Eliza comfortable, loved her and cherished every minute with her while the disease ruthlessly consumed her.  After she passed away we founded the Eliza Braitling Foundation to honour our daughter and we hope that in our own small way we will come to help others.  We have now made available a series of grants to people living with EB.  http://www.elizabraitling.com/
A few months ago my husband, Justin Braitling also became involved in a new initiative called the Future Generation Fund. A public listed company of 4059 shareholders.  

This is an incredible idea, whereby people invest their money into a fund, managed collectively by ten of the best fund managers in the country. These fund managers donate their fees to a selection of their own chosen charities and then the investor can nominate which charity these fees will go to. Because of Justin’s involvement DEBRA has been placed on the selection list and we are proud to say has recently received its first donation of $82,283.80. We look to the “future” as the fund will grow over time and are excited about how this in turn will help DEBRA, not only financially but also by creating further awareness of EB.  http://www.futuregeninvest.com.au/

by Silke Raetze

2015 Chair Award – Melbourne Cotton Ball Committee

Congratulations to the Melbourne Cotton Ball Committee who were awarded the DEBRA Australia Chair’s Award for their hard work in supporting DEBRA over the years. 
From left to right: Back row: Gavin Shaw, Corey Wilkes, Michael McLean.
Front row: Simone Baird, Ashley Thompson, Nina Azzopardi, Melinda Oxford, Donna Whiffin, Melinda Hatton, Emma Raciti, Matty Moore, Andy Moore.
Absent from photo: Jodi Jones, Kylie Neville & Andrew Yodgee

Fundraisers

Runway Fashions Event

Lizzie Carr and Anne Howard had a vision to raise much needed funds for DEBRA Australia.  They first became aware of DEBRA when their granddaughter Lola was born with EB last year.  As a result a committee was formed and with the help of Helen Fletcher, Regan Cass and Sue McKenna a successful event was held in November raising nearly $35,000.  Click here for more of their story.
Lizzie and Anne selling raffle tickets that were drawn during the Runway Fashions event.
Matt, Lola & Nina
TAB Footy & Netball Charity Day

A big thanks to Rob O’Connell and his team for organising the 2015 TAB Footy and Netball Charity Day in Bendigo. As a result $10 000 was raised for DEBRA. The Judd family was also involved helping out behind the scenes. Renee and Craig’s daughter Kendall lives with Dowling Meara EB and she is an inspiration to other kids with her love of life and what she achieves while living with EB.
Elish Judd and James Herbertson with their MVP trophies from the Charity Day.
Rock n Roll Fundraiser

A big thanks to Vanessa Jones, Ian Stokes and John Ruthenberg for organising the Rock n Roll Spectacular held at Stars Night Club at Loganholme QLD in October. The entertainment was fantastic and had rock n rollers dancing all afternoon. $1,000 was raised which was the result of the generosity of the entertainers who donated their time and effort to a great cause. Thanks goes to Roland Storm, Ian B McLeod, Dennis Knight, Barry Larter, Sarlet, Chelsea Set, Chris Knight (Buddy Holly), Sonics (Shadows) and the Rockin’ Bodgies. To see more photos of the day click here. Thank you to Joy-Ann from Blue Dragonfly Photography for sharing her great photos.
Dennis Knight and Dean Clifford 
Other much appreciated donations received:
  • Blue Star Print $485.
  • Plaza Interiors (Melbourne) $25,000.
  • Trinos Opportunity Shop $2,000.
  • Drakesbrook Hotel WA $1,012.45.

EB Nurse Update

EB Clinet and DEBRA International Conference 24th-26th September

Report by Lauren Weston – EB Nurse based at Melbourne Royal Children’s Hospital

After the EB Course at Great Orman Street Hospital (GOSH) I was also fortunate enough to attend the EB Clinet and DEBRA International Conference held a few days later. It was an amazing assembly of health professionals, EB sufferers and delegates from around the world with 38 countries represented.

There was an incredible amount of information from research to clinical practice guidelines, pain and nutritional management to psychosocial and podiatry. There were professional education sessions and training with workshops and discussion groups. We were able to network with people from similar fields, discussing and comparing therapies, nursing care and practises as well as liaise with people from fields unfamiliar to me including scientists, psychotherapists and community support.                      . 

The research going on right now throughout the world is abundant and exciting. There are trials of new therapies as mentioned above with the hope of improving wound healing and therefore decreasing pain leading to improved quality of life for many EB sufferers. 

It was interesting to discuss and discover the roles EB nurses across the world have and what their responsibilities are. I found this to vary significantly from country to country. From a wound care nurse on a neonatal to ward, to an outreach nurse who travels around the country visiting, educating and assessing the newly diagnosed neonate to older children too unwell to travel the distance for a review at their major EB hospital.  

Before attending the conference I was curious to find out what dressings were used on the variety of wounds we see in the EB population. I am happy to say that there was generally a consensus on the major types of dressings and their effectiveness for wound healing. All the major dressings were used by most countries, including Polymem, Mepilex, Mepilex Border, Intrasite Conformable and Mepitac plus others. There were a few promising and exciting dressings and gels introduced to us that we in Australia haven’t got as yet. Hopefully, not too far away though. 

The conference was filled with passionate and dedicated people all with one thing in common- to enhance the lives of people living with EB whether it be through new therapies, a cure or just to live a life less painful. It was an inspiring few days, of which I have returned from with a wealth of information and inspiration. I am extremely grateful for this opportunity.

Research and DEBRA International Update

Attendees of the DEBRA International Conference and EB Clinet Meetings in London

Left to Right: Tariq Khan (Podiatrist Great Ormand Street Hospital), Lauren Weston (EB Nurse Melbourne Royal Children’s Hospital) , Dr Zlatko Kopecki (EB Researcher and DEBRA Australia Director), Margaret Norris (EB Nurse St George Hospital Sydney), Michael Fitzpatrick (DEBRA International CEO and DEBRA Australia Vice Chair), Clare McDonagh (Occupational Therapist at Sydney Children’s Hospital)
Story by Dr Zlatko Kopecki

For the first time, EB-Clinet and DEBRA International conferences were held at the same time and have shared one day of the programme. This resulted in a record breaking attendance to date, both in terms of delegates and countries represented, with over 320 delegates from 35 countries enjoying these conferences (including seven Australian representatives from DEBRA, nursing, healthcare and research professionals). This forum provided an excellent opportunity to share knowledge and expertise and make important networking connections over the few days. The program covered a wide range of clinical and research projects and included presentations on different successful programs from various DEBRA organisations around the world.

Hooper Accountants

DEBRA, as a national charity, requires dedication, passion, resources and mentors behind the scenes to make it all happen.  One of our ongoing supporters is Hooper  Accountants who provide ongoing advice and support via a mentor.  Sue Lissimore has been advising DEBRA over the years and has been involved in the old and new structure of the charity. Sincere thanks to Sue and Hooper Accountants for all your support and being an integral part of the team. http://www.hooperaccountants.com.au/

Upcoming Events

  • Brighter Days Festival - 12th/13th March 2016
  • Melbourne Market Charity Golf Day - 15th April 2016
  • International EB Awareness Week 2016 - 25th to 31st October 2016
  • Cotton Ball SA - 5th November 2016
The printing of DEBRA News is kindly donated by Nu Skin.

 
 
 
 
Copyright © 2015 DEBRA Australia, All rights reserved.



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