Michelle’s Story

“You know how at airports and places like that, people slap a big, bright orange sticker on things like paintings and sculptures, and in bold white or black letters are the words ‘Handle with care’. Or when you’re shopping in the homewares section of a store and on the bottom of the wine glasses box [...]

2021-01-11T11:24:11+10:00January 11th, 2021|Uncategorized|0 Comments

Light Up the Tree – DEBRA’s 2020 Christmas Appeal!

To our incredible DEBRA Community, This Christmas we are asking you to help DEBRA Australia light up the Christmas Tree for all our families across Australia. Christmas is such a special time of year when families come together to reflect on the year that was and celebrate being together. For many of our EB families [...]

2021-01-04T17:34:46+10:00December 18th, 2020|Uncategorized|0 Comments

“My son suffers from the worst condition you’ve never heard of”, by Scott Abercrombie

For me, the worst thing about EB is not the condition itself, it is probably the fact that it is genetic. Sure, when you are a youngster suffering with it, it can be horrible, really horrible. My memories of growing up with EB are a bit vague though.  The first time I realised that I [...]

2020-12-01T10:24:49+10:00December 1st, 2020|Uncategorized|1 Comment

Simone’s Story

As National Family Support Coordinator I frequently observe the strength and determination it takes to live with ‘the worst disease you’ve never heard of’. To say caring for individuals living with EB takes a lot of courage and hard work is an understatement. It’s relentless, gruelling and takes nothing but sheer grit and dedication to [...]

2020-11-03T11:52:37+10:00November 3rd, 2020|Uncategorized|0 Comments

Hayden’s EB Story, as told by Mum Kimberley

My name is Kimberley and my son Hayden (5 years old) has EB Symplex. I had never heard of EB before my son was diagnosed but I had come across the Butterfly Children a few years ago and learnt a bit of information about it. Hayden was diagnosed just before his first birthday. He was [...]

2020-11-03T11:33:31+10:00November 3rd, 2020|Uncategorized|0 Comments

“EB Through a Brother’s Eyes” by Joel Bevilacqua

DEBRA Ambassador, Joel Bevilaqua, tells his story of EB through a brother's eyes Growing up, Matt and I were always super competitive, especially when it came to sports. Matt has never let EB stop him though and still likes to joke that he has spent his whole childhood waiting for me to catch up to [...]

2020-10-12T11:54:19+10:00October 12th, 2020|Uncategorized|0 Comments

Adelaide Research Team shares exciting Latest Research Publication

Hot off the press! The research team from Adelaide (Prof Krasimir Vasilev, Prof Allison Cowin and Dr Zlatko Kopecki) from University of South Australia are excited to share their latest research publication in the prestigious American Chemical Society journal Applied Materials and Interfaces. This research was supported by DEBRA Australia Research Grant and describes the [...]

2020-09-24T13:43:52+10:00September 24th, 2020|Uncategorized|0 Comments