Welcome to DebRA Australia

DebRA is a National charity that supports DebRA State organisations, individuals and families affected by Epidermolysis Bullosa (EB), a rare genetic condition which causes the skin to blister at the slightest friction or even spontaneously. There are approximately 1000 people living with this devastating condition in Australia and 500,000 people world wide. If you would like to find out more about DebRA and their work please email secretary@debra.org.au

DebRA Australia on Facebook

These people include:

NIB Grant funds two National part-time rapid-response

EB Nurses DebRA Australia was recently awarded $100,000 over 2 years from NIB which, it has now been confirmed, will be used to fund two National part-time rapid-response EB Nurses. This is a huge boost toward DebRA’s goal of making quality EB care accessible to all.

Telstra Country Wide has also donated three mobile phones to DebRA Australia, two of which will be allocated to the two EB nurses. These dedicated phone numbers, and other details about the rapid response nurses will be announced early 2010.

Want to help?

Buy a Butterfly item via our website and help DebRA Australia find a cure for EB, so these fragile children can live a life free of pain. Click here to purchase a Butterfly Day Pack online and receive a FREE butterfly ring or butterfly pin!

KIDS CAMP ROCKS!

The DebRA Conference and Kids Camp isn’t all hard work you know! After all, it is all about the kids. The 2009 camp was judged to be the ‘best yet’ on the evaluations that the kids filled in on the last day of the conference. And after hearing about all the wild things they got up to we’re not surprised!

This year the kids watched a private seal show at Underwater World, just for them! They went to laser skirmish where they really enjoyed beating the adult volunteers! They played some games at the games arcade, got crafty in the kids room, got lost in the hedge Maze, took a leisurely boat ride along the canals, and some lucky ducks even got to go to Steve Irwin’s Australia Zoo where they fed some hungry elephants. What an amazing holiday!! We can’t wait to see what they get up to at the next camp!

DebRA’s Volunteers - THANK YOU!!

We all know that the conference would not be possible without our amazing, talented, generous (and good looking!) volunteers. They are the scaffolding that underpins the success of every conference, and we really appreciate their generosity of spirit and the donation of their time.

The phenomenal success of the 2009 DebRA Australia EB Conference & Kids Camp is a reflection of the ever-increasing dedication and enthusiasm that our team of volunteers displays.

Thanks to the following angels who donated their time to make the 2009 EB Conference such a huge success!! We couldn’t have done it without you!

Vivienne at "Big Fish" - conference organisers
Kris Morriss - Photographer
Shelley Oates-Wilding
Tom Lee-Archer - Band / audio equipment
Kerry McIntyre, Dee Degnian, Jodie Boco, Drew Leach, Jenny Dwyer, Barbara Neil, Larney Bishop - children’s activities
Dee Degnian / Sharon Stalhlut / Belinda Fagan - Nurses
Roger Baker - Bus driver
Shayne Holley & Nigel Holley - Transport
Barbara Holley - Gift baskets
Mitsubishi Electric -Loan of data projector

Guest Speakers
Shay Zulpo
Prof Dedee Murrell
Louise Stevens
Anna Kemble-Welch and Martin Hanley
Geoff Harris
Shelley Oates-Wilding

Conference Quick Stats

The 2009 conference was attended by 147 people - including members, volunteers & speakers.
Not including volunteers, there were 54 family and individual conference registrations.
100% of guest who answered the question believed that there should continue to be an EB conference & camp held every two years.

Thank you to our major sponsors and DebRA States for making the
EB Conference / Camp possible

"Where to from here?" EB Conference Planning Session

It was great to finish the conference with our DebRA Australia AGM and our "Where to from Here?" planning session. Facilitated by Executive Committee members Michael Fitzpatrick and Sue McKenna, we were also lucky to have mentors Dr Jenny Marty and Shay Zulpo to offer their support and advice through the planning process.

State representatives at the planning session included;

NSW - Kylie Gibson & Mary Woods
SA - Laraine Frost & Linda Turner
VIC - Simone Baird & Melinda Oxford
QLD - Gavin O’Brien & Kathy Hagan
NZ - Anna Kemble-Welch & Martin Hanley

Planning session feedback indicated that it was a very valuable session and we would like to thank everyone who was involved. People brought some fantastic ideas to the table and they have given us a lot to think about and some great inspirational suggestions to follow up.

Our 2009 - 2011 Action Plan has been developed from these two great sessions, and so as we move forward as an organisation over the next couple of years, we know we are all heading in the same direction, and towards the same goals.

Welcome to our new DebRA Fundraiser

We'd like to officially welcome to our new member, Cherie Mataczyna, who will be working as DebRA Australia’s Fundraiser. Cherie will be specifically helping DebRA develop sponsor relationships and fundraising campaigns to spread the word about Butterfly Day and DebRA Australia. We are very excited to have Cherie on board - we can already see how Cherie’s strategic fundraising ideas will greatly benefit DebRA’s visibility and fundraising abilities.

"DebRA News Army" Volunteers

I would like to take this opportunity to personally thank the lovely volunteers from the Pittsworth State High School who help me to fold, collate and mail DebRA News each 6 months in order to get the issue out on time to all of our members around Australia.

These inspiring young adults come together of their own accord simply to help their local community and DebRA Australia, and we are very thankful that they do! We have from the front row working around the table clockwise - Sam (willing 3 year old helper), Vanessa, Alex (Mt Tyson School), Kate, Fraser, Garth and Venessa.

A big thank you from Sue