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DEBRA News Spring / Summer 2011

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National EB Nurse Program Sponsors

Kelly Dixon Great North WalkDay of Pain Jeremy Hill

Brightsky EB Dressing Education and Resources Tool

HELPING ORPHANS WORLDWIDE SUPPORTS EB KIDSBECOME AN EVERYDAY HERO FOR DEBRA

 
Kelly Dixon raises $3600 for DEBRA Walking the Great North Walk
 

Kelly raised an amazing $3600 by completing the Great North Walk – 250kms from Sydney to Newcastle.  We think Kelly is amazing for completing this mammoth walk to raise money for DEBRA, and to raise awareness of EB in the community.  Thank you Kelly!

Here is a summary, written by Kelly, about her Great North Walk experience;

“The walk was a lot more challenging than I thought and took me through many different environments from salt marshes to mountain ridges.

Day 1:  I had some close encounters with lizards and an echidna that was sniffing around my feet. Saw some beautiful scenery around Lane Cove River.

Day 2: I got pretty wet and found out what leeches look like! Visited Fishponds, a magical place where the sandstone is eroded out in circular patterns by small waterfalls. 

Day 3: Very challenging, with a lot of up and down hill sections, but some rewarding views of Jerusalem Bay and the Hawkesbury River around Brooklyn.

Day 4: Walked through dense bushland where huge sandstone blocks were overgrown with moss and vines, ending at Girrakool with a cascading waterfall and aboriginal engravings.

Day 5: Into Yarramalong Valley through horse (snake and tick!) country past sheer sandstone cliffs above and drops below.

Day 6: I went from the valley to the Watagan Mountains with great views out towards Congewai and the lower Hunter Valley.

Day 7: Continued along the Myall Ranges and onto the Sugarloaf Ranges with more spectacular views! Rob Raymond from Earth Data, the company I work for, joined me on this day and experienced the joys of leeches but agreed the scenery was worth it. 

Day 8: I had a lot of company for this, the last day.  Starting at Teralba the walk took us past the peaceful Lake Macquarie and out to Glenrock Lagoon where torrential rain hit! The beach views made it all worth it and we didn't even have to get in the water to cool off! We all relaxed with a few drinks after reaching the end of The Great North Walk.

Kelly's thank you's!!

I'd like to thank Conor Byrne, Matthew Crotty, Mark Spencer, Belinda Sondhu, John Howard, Winona and Alannah Wilson for walking (and singing The Great North Walk song!) with me on this final day, and my mother Jenney Dixon who provided vehicle support when needed. You all kept me going! Special thanks to my partner Daniel Prasad who also provided vehicle support and foot rubs!

I'd also like to thank everyone who donated by cash and through the everydayhero.com website, and Earth Data Pty Ltd for generously matching all donations made by Earth Data employees bringing the grand total to $3600! What a fabulous outcome.

It's been a rewarding experience in many ways; improving my fitness, testing my determination, raising awareness of EB and funds for all those living with EB. I'm hoping I can make it an annual thing, with a fun run open to the public for the last 15kms or so of the walk.”

 

Kelly Dixon

 

 

Parts of Kelly’s walk are available to view at http://www.everytrail.com/profile.php?user_id=403536

 
DEBRA Donates $1900 to Bosnian EB Family
 
Dr Zlatko Kopecki PhD, from DEBRA in South Australia and Research Officer at the Women’s and Children’s Health Research Institute in Adelaide, recently told DEBRA about a family in Bosnia with a daughter with EB who were struggling to pay for dressings for the basic care of their daughter's condition.  DEBRA state representatives, the DEBRA committee and individual donors raised donations totalling $1900 which Zlatko advises us will likely pay for dressings for the young girl for at least 8 months.  It was a wonderful gesture by all involved, and fantastic of Zlatko to kick-start the fund raising for this young Bosnian family.
 
Left: Beautiful Little Ema, the Bosnian baby DEBRA raised money to help
nib foundation grant

DEBRA’s First EB Nurses Employed at Sydney Children's Hospital & Brisbane's Royal Children's Hospital

This has been made possible thanks to the generous funding from a generous nib foundation grant, and thanks to donations & unwavering support from debra supporters, members and mentors. Click here for all the details! 
 
Helen


Helen Cuell Treks the Kokoda Track for DEBRA

We'd like to say thank you and congratulations to Helen Cuell who recently trekked the Kokoda trail.  As well as accomplishing her own lofty goal of completing the trail, she also selflessly used the experience to raise money for DEBRA which we really appreciate.  This is a short account of her experience;

"A huge thank you goes out to all those who supported me with their kind donations. As l have mentioned to some l did not walk alone those people went with me in my thoughts. The track was challenging , and l did the hard work before hand with my training, so was able to enjoy it. It is not for everyone, but those of you who have pondered with the thought, GO DO IT.   Out on the track l coped well , and remained focused, how ever the week after l returned l was rather emotional for many reasons. It proved to be a more powerful walk than l realised, and took some getting over.  This has to be one of the best experiences of my life, and l did not want it to end. Am seriously thinking of doing it again next year and would be happy for some of you to join me."   -  Helen Cuell

Left: Helen in the thick of it on the Kokoda Trail

 

 

 

Next DEBRA Australia EB Conference & Kids’ Camp

The next EB Conference and Kids’ Camp, supported by the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, will be held in April 2012 in Melbourne, giving us plenty of time to fundraise and plan for a conference to beat all conferences!  Click here for some highlights from last year’s amazing conference on the Sunshine Coast.

Left: Some of the boys having a BIG laugh at the 2009 conference & kids' camp.

 

EB Survey Results

Thank you to all of our members who contributed to the EB survey DEBRA Australia conducted recently. The results will be invaluable when we are lobbying government for more accessible services and treatments for you. They also show us how far we have come. Click the following links to view the results of the EB Nurse and the National EB Dressings surveys.

 

Debra Australia Volunteers

"DEBRA News Army"

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!

Left: (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
 
 

Executive Committee Members 2009-2011

The DEBRA Executive Committee for the 2009 - 2011 period is remaining the same with Michael Fitzpatrick as President, Sue McKenna as Secretary and Michelle Pickles as Treasurer.
 
 

Latest DEBRA Newsletter

DEBRA Australia Newsletter - Spring/Summer 2011

News Archive

 

Newsletter Archive

DEBRA Australia Newsletter - Autumn/Winter 2011

DEBRA Australia Newsletter - Spring/Summer 2010/2011

DebRA Australia Newsletter Autumn Winter 2010
DebRA Australia Newsletter Spring Summer 2009
DebRA Australia Newsletter March 2009

DebRA Australia Newsletter October 2009

DebRA Australia March Newsletter 2007

DebRA Australia November Newsletter 2006

DebRA Australia Newsletter October 2007

DebRA Australia Newsletter May 2008

DebRA Australia Newsletter November 2008