Who is DebRA Australia?
Dystrophic Epidermolysis Bullosa Research Australia (DebRA Australia) is a professionally-run, non-profit organisation that receives no Government funding. DebRA was set up in 2005 to fight for Aussie children born with a rare, genetic skin condition called Epidermolysis Bullosa (EB). This organisation is run by a team of committed and hard-working volunteers and one part-time employee, located all around Australia, each closely connected to the cause.
Connor's Story
Imagine your skin is as fragile as butterfly wings. It falls away from your body at the slightest touch leaving painful blisters and over time scarring so severe that your fingers and toes may fuse together. Imagine having to live your life wrapped in bandages and in constant pain. Even lying down or rolling over hurts your skin. Now imagine the thought of living your entire life in this state with no hope of a cure.
Hi my name is Connor and I am 11 years old. I have EB (Epidermolysis Bullosa) this means that my skin does not work properly and I have sores over my body and inside. Sometimes I can not eat my favourite food like chocolate or fruit because it is like eating barbed wire and hurts my mouth, can you imagine that? I have to be feed through a tube in my tummy. Sometimes I can't play with my friends because I have sore eyes and have to stay in the dark for days until they get better. I have to breathe through a tube in my neck called a trache. I hate having a shower because it hurts my skin and it takes me and mum 2-3 hours to take off the old dr essings and put on new ones to protect my skin. My favourite things are motorbikes and I have a quad bike that I ride when I can as well as playing my X-box 360.
DEBRA Australia has a vision working for a life free of pain. We provide a network of support for kids like Connor. With access to specialist nursing services, provision of vital medical equipment. Holding camps so people can learn the latest about EB, make friends with others living with EB so they do not feel isolated. DEBRA Australia also lobby's the government at all levels for improved services and funds research so that we can ultimately find a cure. Please help us support kids like Connor.
What is EB?
DebRA Australia advocates for the 'Butterfly Children' who live with EB, born with skin as fragile as a butterfly's wings. There is currently no cure for EB. These brave children;
- have skin that blisters and peels at the slightest touch, internally and externally.
- live in constant pain, often likened to the pain of living with third degree burns.
- bandage their skin every day to protect and heal the blisters and wounds.
- often have their young lives cut cruelly short by secondary diseases, such as skin cancers.
How DebRA helps its members
Without DebRA Australia, our members would have nowhere to turn. Working together, DebRA;
- lobbies for improved EB services
- raises money for research into a cure for EB
- researches best practice treatments for EB
- provides emotional & financial support and advocacy for their members, and
- provides members with important social and medical support networks
Why DebRA needs help
We are small: Although DebRA Australia is a powerhouse of a charity, we are very small, and often struggle to get our message out to the public and to the government.
We are rare: DebRA Australia is the only charity of its kind in Australia because EB is rare, affecting only 1000 Australians. It is hard to secure funding for research into a cure for EB when people are often not directly, or even indirectly, affected by EB.
But we do count: DebRA is the only EB support group for families with EB, we are making a difference.
How DebRA Australia is changing the world
For three long years we have battled the political heavyweights of Canberra to get a National EB Dressings Scheme off the ground to fund dressings which often cost families and DebRA thousands of dollars a month. We have attended meetings at Parliament House, sent numerous letters, meet with local politicians, and conducted surveys with our members to present current data to the Federal Health Minister.
Our hard work finally paid off late l ast year when it was announced that DebRA Australia had brought about the FIRST EVER Australian National EB Dressings Scheme, worth $16.4 million over 4 years!! Meaning EB patients now receive monthly dressing orders delivered straight to their door. This is a huge step forward for EB patients and their families, but there is much more to be done.
DebRA Australia's recent successes
A federally-funded National EB Dressings Scheme - $16.4 million over 4 years starting January 2010. This is a first for Australia. Similar schemes have been around in the UK and NZ for 10-20 years.
2 part-time National Rapid Response EB nurses funded for 2 years from 2010. This is a first for Australia. We are already applying for more financial support to keep this crucial nursing service going long-term.
DebRA's current challenges
1. Sustain federal funding to ensure the EB Dressings Scheme stays a permanent service.
2. Secure permanent federal funding for EB specialist nurse services Australia-wide.
3. Spread the DebRA message through social networking and national events.
4. Further fund research into a cure for EB.
5. Secure funding for the Biennial EB Conference and Kids Camp in 2012 for all DebRA members.
6. Increase the exposure of the DebRA brand.
How do I find out more?
Visit our website www.debra.org.au.
'We are small, rare, but we do count.'
