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Team Debra
Story
Hello,
My name is Johanna and I live with a mild version of a condition you’ve probably never heard of: Epidermolysis Bullosa (EB)
It is a rare disease whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns over larger areas of your body. It is very painful. People suffering from this disease are often called butterfly children as our skin can be as tender as a butterfly’s wing.
Recently a good friend of mine, Jessika, passed away on a severe form of EB. This made me even more determine to raise funds for Debra Australia and help finding a cure for EB.
My friends and I are walking for those who can’t. I know I’ll cross the finish line exhausted and most likely blistered on my feet, but that’s nothing compared to what people with severe EB go through every day. Please help my team and I support people suffering from this devastating genetic disease and bring us closer to desperately needed treatments and cures.
My friends and I are walking for those who can’t. I know I’ll cross the finish line exhausted and most likely blistered on my feet, but that’s nothing compared to what people with severe EB go through every day. Please help my team and I support people suffering from this devastating genetic disease and bring us closer to desperately needed treatments and cures.
We are inspired by the work of DEBRA Australia and want to support them by raising money as part of my participation in Bridge to Brisbane. Please help us help them by giving whatever you can. The more people that know about DEBRA Australia, the greater their impact, so please also spread the word by sharing with your friends and family.
Thank you in advance for your generosity, it means a lot!
Donations made through this platform are secure and will be remitted directly through to Debra Australia.
Thank you so much for your support!
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The Trustee For DEBRA Australia
DEBRA Australia is an organisation supporting families living with a rare genetic skin blistering disease likened to third degree burns called Epidermolysis Bullosa (EB). DEBRA delivers life changing family support and life changing programs to individuals living with EB all across Australia.
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