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DEBRA Australia News
Winter 2013



On March 23rd 2013 the Cotton Ball was held at the Melbourne Convention Centre.  900 people attended and the evening was the largest and most successful fundraising event ever held for DEBRA Australia.  Our most sincere thanks go out to the Cotton Ball volunteer organising committee and our own DEBRA Victoria for pulling off such an amazing event which raised $465,000!

Click here to see how that money is already helping our members...

We all look forward to the next Cotton Ball which will be held on the 21st March, 2015.
 


New Family Support Program

Thanks to the success of the Cotton Ball, the Family Support Program Committee now has a budget that they can dedicate to helping EB families with aides, equipment and quality of life needs that our member families can’t afford, and can’t necessarily access through other sources or government bodies.

The committee meets on a monthly basis to discuss applications received by our members and the specific support requirements of these families.

If the committee can assist you with any family support needs please lodge an application form via Sue secretary@debra.org.au or Simone (Family Support Program Coordinator) ebfamilysupport@debra.org.au on or after July 1.


New EB Nurse in Melbourne

We are very pleased to announce that DEBRA has, thanks to the money raised by the Cotton Ball and the EB Cross Country Adventure Ride, employed a new EB Nurse! Our new EB nurse, Leigh Fitzsimons, is now working part time at the Royal Children's Hospital in Melbourne, to increase the level of support for EB families in Victoria and Tasmania. Leigh is a welcome addition to the DEBRA family.  Click here for Leigh's contact details.
 





The EB Cross Country Adventure Ride was a massive success and so much fun to be a part of.  From Kenilworth doing a loop around Queensland back to the wonderful Darling Downs, the ride was an adventure and a half. We met some amazing people, saw some incredible hidden gems of the Queensland outback, and in the process raised $38,000 which was donated to the National EB Nurse Program. 

Thanks to our sponsors and officials who helped us get this whole adventure off the ground with their support. A special thank you to Anja and Rob for organising and planning the ride, and to Fleet Crew and Black Bear Investments for donating a support vehicle.

For all the details head to the DEBRA News page, and for a full day-by-day wrap with photos from the ride click here.


Research & Education Travel Fellowships

The 2013 Research & Education Travel Fellowship has been allocated to two recipients.  Firstly, to our Qld EB Nurse, Samantha Hay who will be using the grant to travel to the UK to attend Epidermoloysis Bullosa Introductory and Advanced study days at Great Ormond Street Hospital for Children. 

Secondly, a travel grant has been offered to Clement Loh, a 5th year UNSW medical student who completed Honours last year in dermatology research, who will attend the International Investigative Dermatology World Congress of Dermatology Research.

Congratulations to both Sam and Clement; more details are available on our website.




L – R: Back Row; Kerry (teacher), Alex, Caitlyn & Erica.  Front Row; Kate, Bree & Hayley

Our volunteers are such a vital part of our organisation, and we would like to take this opportunity to say thank you to all of you who put in so much time and effort to raise awareness for DEBRA.  Your work is worth so much to us, we value you all so much and we wouldn’t be where we are today without you, so thank you.  Some of the volunteers who helped us out at the end of the EB Cross Country Adventure Ride are pictured above; thanks ladies!




Milad Bahram has been awarded the recipient of the 2013 Follow Your Dreams Grant, a grant set up by Carmel Harris and administered by her family.  Milad is very excited to be chosen, and his life-long dream is to attend a live Liverpool soccer match.  He will be heading to the Liverpool soccer game in Melbourne in July so we can’t wait to share his photos when he reports back.

Our 2012 recipient, Lisa Brains, took her friends on a girl’s weekend trip to Sydney.  Lisa was initially going to take a cruise but due to ill-health wasn’t able to travel overseas because of travel insurance issues, but from the photo above it looks like Lisa and her lucky friends had a great time in the big city!

If you would like to apply for the 2014 Follow Your Dreams Grant, click here to download the registration form or contact us at secretary@debra.org.au or 07 46 937 003 for more information.

Pictured above: Lisa, Kate & Linda before their helicopter ride over Sydney Harbour


Charity Golf Day

Melbourne Lions Club & Fresh State (Queen Victoria Market) held a charity Golf Day on May 10 and chose DEBRA Australia as their nominated charity. They had 80 players registered and raised $30,000 for DEBRA from the golf day and the evening raffle.  DEBRA's Simone Baird conducted a short presentation about DEBRA to the guests which was followed by a lovely dinner. 

Simone then went along to their cheque presentation event on June 18th to accept the generous donation on behalf of DEBRA.  Our thanks go to the organisers and everyone who went along to support our charity.


Donations

Thanks to the following organisations who have donated to DEBRA over the past few months.

Cotton Ball - $410,000
The EB Cross Country Adventure Ride - $38,000
Todd Family Trust - $10,000
Stifel Research - $1,270
Melbourne Lions Club & Fresh State - $30,000




Dust off your fragile china for our fragile kids!


This October, during International EB Awareness Week, we would like everyone to get together with their families, friends and neighbours by holding a morning or afternoon tea for DEBRA. 

Have you got some special (dusty) china in the cupboard that you’re saving for when the queen comes to tea?  Well, get it out, show it off and put it to some good use.  Invite your nearest and dearest to afternoon tea, and charging a gold coin donation (or the kind of money that folds) raise funds and awareness for DEBRA during the last week in October – International EB Awareness Week.

It’s an easy and delicious way to help DEBRA and our EB kids.


EB Care Registry

If you haven’t already registered your details on the EB Care Registry, please do so.

We are all set up to help you get started so please either call your state representative or call Sue on 07 46 937 003 so we can help you get your details on the registry.  You can read more about the registry here.




AusGiv

Ausgiv raises funds by offering loan packages from the major banks and lenders to you, then redirects the referral fees into your chosen charity or community group.

The good news for DEBRA is that we are now one of the charities that people can choose to donate the loan commissions to.  This doesn’t cost DEBRA anything and is an easy way for people to donate to our charity.

So if you, or anyone you know are looking for a better deal on their loan, contact Ausgiv today and as well as working to save you money, they will also be working to help DEBRA.  Go to their website for more information www.ausgiv.com.au


DEBRA AGM

The next DEBRA AGM for DEBRA Australia Inc and DEBRA Australia Ltd will be held on Monday 14th October.

DEBRA Australia Inc AGM – Monday 14th October at 7.30pm (via teleconference call)

DEBRA Australia Ltd AGM – Monday 14th October at 7.40pm (via teleconference call)

If you would like to join the meeting, please contact Sue at secretary@debra.org.au or 07 46 937 003 to receive the teleconference details.



DEBRA SA Quiz Night

Come and test your trivia and general knowledge and raise funds for care, research and cure for the ‘butterfly children’. There will be great prizes and David Keane will be our Quizmaster. Quiz buffs book early!

When: Saturday 17 August 2013
Start time: 7.15 pm Sharp
Venue: Modbury Bowling Club, 50-97 Jack High Lane, Ridgehaven
Tables of 8 (Max) @ $15 per Person
Phone: 08 7423 6284 for more details or to book your table

In-Home EB Nurse Program

The In-Home EB Nurse Program, funded by the Little Heroes Foundation, has recently been expanded and is now running in SA, QLD, NSW and VIC. 

This important program enables nurses to be trained up to visit more severe EB patients in their own homes and provides much needed support with care routines for parents and adults living with EB.  Click here for more information.




 


Donate to DEBRA

DEBRA relies solely on donations, grants and sponsorships to continue the important work of supporting our members. To make a secure online donation to DEBRA Australia, click here.

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