DEBRA Christmas News 2012

DEBRA Australia News

DEBRA News

Christmas Edition

A word from the Chair

2012 has been a busy and exciting year for DEBRA Australia. There have been a lot of changes and momentum has been building within the organisation and beyond as we forge ahead into 2013.

One of the biggest organisational advancements in the past year is the establishment of DEBRA Australia Ltd, and the winding down of the incorporated organisation. With our National organisation and State branches now coming under the one DEBRA umbrella, our important work becomes more streamlined and efficient, meaning we can better utilise our resources to support and advocate on behalf of our members. Thank you to all of the people who were involved in getting DEBRA to this important position.

Another major boost for DEBRA this year has been the announcement by the Federal Government that the National EB Dressing Scheme has been extended indefinitely and has broadened its criteria so that more families can access subsidised dressings. This is what we have been working so hard for, for so many years, so we couldn’t be happier that our members are continuing to receive the support that they deserve and have needed for so long. In light of this, we still continue to push the government for more services and a better deal for our members.

The In-Home EB Nursing Program, which has been very successful helping some of our members in South Australia, would not be possible without the generous support and professional organisation of the Little Heroes Foundation. Thanks to their team for developing this program in collaboration with DEBRA SA and helping to make specialised EB nursing care accessible to all DEBRA members. The program, which has recently been extended to Queensland, will also be rolled out in Victoria and New South Wales in 2013.

DEBRA has been lucky to receive some major grants and donations during the year. The Newman’s Own Foundation granted DEBRA $50,200 to fund the National EB Nurse Program. We were also lucky enough to be awarded a Telstra Community Grant of $10,000 to purchase iPads and mobile data to keep our young members connected while they are away from school and in hospital. We thank these two supporters for their generosity and for helping our members. The Cannonball Charity Ride raised an amazing $85,000 for DEBRA's National EB Nurse Program and I would like to thank the organisers, riders and supporters of the ride for supporting DEBRA and its members.

There are going to be a couple of important fundraising events held in 2013, and I would like to take this opportunity to acknowledge the work of those involved in organising these events to raise money for, and awareness of, DEBRA and EB. The Cotton Ball will be held on 23 March 2013 in Melbourne and with more than 890 guests expected to attend, it will be a huge fundraising boost for DEBRA. The aim of the evening is to raise vital funds to provide a Victorian based nurse to support EB families. We are very grateful to the volunteer Cotton Ball Committee and to DEBRA VIC for organising this amazing fundraising event. There is more information about The Cotton Ball on the homepage of the DEBRA website.

The EB Cross Country Adventure Ride is an off-road dirt bike adventure catering to riders of all abilities, which will raise funds for DEBRA’s National EB Nurse Program as the riders wind their way around Queensland. The ride will run from 13 to 27 April 2013 and more information can be found on the DEBRA website.

As the festive season and the New Year draw nearer, I would like to acknowledge the members of the DEBRA board and various committees of DEBRA for their commitment and contribution to the organisation’s goals this year. In addition, I would like to thank all our stakeholders for their significant contribution to our key projects, initiatives and accomplishments during the year 2012.

Best wishes to you and your families. On behalf of the DEBRA Australia Board, employee and members, I wish you all a prosperous New Year.

John Bacon
Director and Chair of DEBRA Australia

Merry Christmas from DEBRA International
The DEBRA International Executive Committee would like to extend their best wishes to all of DEBRA Australia’s stakeholders and members. We hope that your 2013 is a happy and prosperous one. Merry Christmas and Happy New Year to you all.

Pictured- The DEBRA International Executive Committee. Back: V. Zmazek, G. Brumitt, M. Fitzpatrick, E. Makow, R. Gallagher, R. Hood; Front: J. Fearon, R. Riedl, F. Palisson (not in the picture: P. Sobieszczuk)

Raffle Results
The volunteer Pittsworth High School students (pictured below) and Principal drew the 2012 DEBRA Raffle on the morning of 19 November.

The lucky raffle winners are:

• First Prize: 3D TV 42” won by R Woods (ticket 6152)
• Second Prize: iPad 2 won by Jodie Young (ticket 3075)
• Third Prize: Framed Jackie French signed poster won by Cath Cram (ticket 3053)
• Fourth Prize: Honda/Bundy pack won by Rob Wilson (ticket 1483)
• Fifth Prize: Chalala Muesli Pack won by M Woods (ticket 0739)

Thank you to everyone who sold and bought tickets to help support DEBRA and create more awareness. Your support is very much appreciated.

EB Nurse Program
Our EB Nurse Sam (pictured below) is still doing an amazing job as a part of DEBRA’s National EB Nurse Program, attending to members in need of specialised, high-quality EB medical care. Thanks to Sam for being such an important resource and friend to all of those people she supports by travelling the country and providing telephone support.

DEBRA’s National EB Nurse Program has been evaluated as being such a valuable service that the program has now been expanded to employ a nurse in Melbourne in 2013, which will be a major boost to families living in Victoria, but will assist families nation-wide.

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