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DEBRA Australia News
Summer 2012


National Volunteer Award for Michael Fitzpatrick

DEBRA Australia's Michael Fitzpatrick (pictured above with his son Connor and The Hon Greg Combet AM MP) was recently awarded a 2012 National Volunteer Award by The Hon Greg Combet AM MP of the Federal Government. 

Michael and his family attended a special awards ceremony on December 18 to accept the award.  We are so happy for Michael, who goes above and beyond every day for our members.
  He has been the driving force behind the initiation of the National EB Dressing Scheme for DEBRA, the National EB Nurse Program and represents DEBRA Australia on the board of DEBRA International.  He works so hard and gives so much and we couldn’t be prouder that he has been recognised for his efforts.  Congratulations Michael.

Vote for DEBRA

We are applying for a grant from SunSuper to fund the cost of supplying 5 more iPads with an internet data plan to our most deserving young members living with EB.

We need to get as many online votes for our application as we can in the month of February to win the grant.


Please click the link below to cast your vote before February 28;

http://sunsuperdreams.com.au/mobile/dream/provide-ipads-to-kids-living-with-eb

Vote now, then forward the link to your friends and family and ask them to vote too.

Thank you for your support!


Thank you DEBRA International

We were recently awarded a grant from DEBRA International to assist EB patients in Australia to register on the EB Care Registry.  This grant will provide us with the resources to actively support our members in registering their details on the EB Care Registry, adding to the valuable global collection of data on EB.  Thanks DEBRA International for your support.

"We believe that the broad use of the Registry will increase awareness of potential treatments, support policy initiatives and advocacy and lead to deeper engagement with the EB community of patients, families, qualified researchers and others in the health care community."
www.ebcare.org

If you still haven't registered for the EB Care Registry please contact your DEBRA representative so we can help get you started.
Inaugrual Research Grant Awarded

DEBRA Australia is pleased to announce the successful applicants for its 2012 Research Grants. The principal grant of $15,000 has been awarded to Professor Allison Cowin (pictured top) and Dr Zlatko Kopecki, Centre of Regenerative Medicine, Mawson Institute, University of South Australia, in Adelaide, for their laboratory-based project "Function of Flightless protein in the development of SCC in children with fragile skin".

As further research funds have become available due to a recent bequest, the Board of DEBRA Australia has also decided to make a smaller, secondary award of $10,000 to Dr Mae Ramirez and Professor Dédée Murrell (pictured bottom) from the Department of Dermatology, St George Hospital, University of NSW, in Sydney, to assist in the conduct of their Clinical Trial "Investigation of Micro-needling Skin Therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB)." For full details of these studies, please go DEBRA’s website and click on the Research Grant Program link or click here

DEBRA Australia Research and Education Travel Fellowships

DEBRA Australia is pleased to announce the establishment of a new research and education travel fellowship program to foster the professional development of those working in either a clinical or research environment in Australia. Nurses, scientists, junior clinicians and other health care professionals, including students, will be eligible to apply for assistance in gaining further education on EB or presenting their work at national or international conferences.

Applications will be called twice per year, with up to $6,000 available annually (approximately $3,000 for each round of awards). The maximum amount that will be awarded to an individual for travel in Australia or New Zealand will be $750 and the maximum for travel to other overseas locations will be $2,500. The Fellowship may be used for costs of flights, accommodation, or meeting registration. The number and mix of Fellowships awarded in each round may be varied at the discretion of DEBRA Australia's Board of Directors, depending on the applications received. However it is expected that at least one award in each round will be made to a nurse involved in EB care.

Round 1 closes on 31st March 2013 for travel between 1st July and 31st December 2013.
Potential applicants should consult the Application Guidelines, Terms and Conditions here, or on the DEBRA Australia website.


EB Cross Country Adventure Ride Update

Whilst most of us were sitting around opening presents and eating Christmas cake, Rob and Anja from Overlanders Motorcycle Tours were out sampling dust and dirt on some tracks and trails we’ll be riding on the EB Cross Country Adventure Ride 2013.

Now the dust has settled and the destinations are locked in, including points of interest and fascinating places to visit. The overnight stops - some with beds - are booked and the publicans are advised to stock up the bar for thirsty riders as there are 4500km of backtracks and dust coming up.

From Kenilworth to the beach through some holes in the ground, past some dinosaur graveyards then back to the Downs...it's going to be an adventure and a half.

If you would like to join the ride, or sponsor this project, please email ebcrosscountry@hotmail.com or call Rob 0427 425 509 or Anja 0439 766 040.


Albion Park Raceway Fundraiser
Recently, Sammie Ayre (pictured left with Dean Clifford) organised a fundraising event at Albion Park Raceway to raise awareness and funds for DEBRA Australia.  We are so grateful to Sammie for organising such a great event, and for raising over $1050 for DEBRA.

Click here to read more from Sammie about this great event held in December.

(Sammie lives with her husband and 2 young daughters who have EB – a huge thank you from DEBRA Australia for all the hard work, awareness and funds raised to support our member families)


Donations & Grants
DEBRA is very grateful to the following organisations and private donors for their generosity over the last few months;

Thanks to the generosity of the Pittsworth & District Campdraft Association's cattle donors and Campdraft sponsors, the Association's committee has been able to hand a generous cheque for $4000 to DEBRA.  Sue McKenna was there to receive the cheque from the Association (pictured right) and said, "It is lovely that a small community group can be so generous and help families out on a national basis."

Richard Gremmo (pictured right with his colleagues), of Gremmo Homes has sent DEBRA a generous donation from his friends and work colleagues, in memory of Rebecca Brewer.  We are very grateful for Richard's donation, raised from donating a portion of the entry fees for their footy tipping competition.


Heathcote Public School sent DEBRA a surprise donation of $564.35 in December which they raised in honour of Josh Gibson.  We are very thankful to the students and teachers for supporting DEBRA and its members.

The Cotton Ball

The Cotton Ball is a major fundraising event being held on March 23rd at Melbourne Convention Centre, which has already sold out, selling tickets to 900 people! The aim of the event, which Sam Kekovich will MC, is to raise funds for DEBRA's EB Nurse Program and to support families living with EB.

The organisers have told us that there will be a silent auction and a main auction. The main auction items will include;

  • Seats in the AFL Carlton Football Club Box
  • 6 x 1 week holidays at Byron Bay apartments
  • Helicopter for 5 people to Lindsay Park with accommodation & meals
  • Kokoda trail for 1 person including airfares, accommodation, food, equipment
  • 3 x Pro amateur sports in the Masters Golf Tournament including accommodation at Crown
  • 1 week in a Denver, Colorado ski resort
  • A Scissor lift, and if you can believe it, there are more prizes to announce later. 
Raffle tickets will also be sold on the night for 2 major prizes of 2 diamond jewellery sets, each with an RRP of $7000.

There will also be 100 silent auction items and entertainment by the talented singer, Silvie Paladino.

It's going to be an amazing event, and we wish the organisers lots of luck for the night.  Stay tuned to our next newsletter for photos and stories from the event.

Follow Your Dreams Grant

Applications are now open for the Follow Your Dreams Grant for 2014. This is an opportunity for our young EB members to DREAM BIG, and ask DEBRA to help them achieve their dream. It may be to buy a new phone to keep in touch with their friends and family, or maybe they would like help paying for a holiday.

If you would like to apply for the 2014 Follow Your Dreams Grant, go to the DEBRA website and click on the "Follow Your Dreams" link on the home page, or click here and get your appliction in by January 31, 2014.


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.
 



iPads-a-Plenty

As we mentioned in our last newsletter, DEBRA was awarded a $10,000 Telstra Community Grant to keep our young members connected while they are isolated in hospital and away from school and their home towns. 

We received 13 applications from members for the iPads and the year's worth of mobile data, and as our Telstra grant only covered the cost of 10 iPads plus data, DEBRA decided to cover the cost of the extra 3
iPads plus data so no one has to miss out as all were such worthy applicants.

Here are some of the 'thank you' notes we have received from the recipients;

"Thank you DEBRA and Telstra for Molly’s iPad. The best thing ever for long car drives as we are so isolated (Mt Isa) and terrific for hot days inside for Molly to use. Thank you so much, much appreciated". Bill, Denise and Molly (pictured below)



"I would like to say a big thank-you for my awesome iPad I love it so much. Mum and Dad have put lots of educational apps on for me and Dad also set up my own email because he is away a lot and I can learn how to write to him.  I have been using my iPad a lot when my feet have been sore mum said when its down time I can use it.  Anyway thank you again to everybody for this iPad." Lachlan Woodward

We would like to thank Telstra for supporting our young members.







DEBRA NSW Trivia Night
The 2012 trivia night fundraiser was be held on Friday 26 October at St George Leagues Club, Kogarah and was another huge success and an alround great night.

The night raised $6500 for Epidermolysis Bullosa.

The night started off with Dean giving an awe-inspiring talk about living with EB. I don’t think there was anyone in the room that was not affected by such a moving story. Thank you Dean!



From then on, it was a frenzy of trivia, raffles, games and auctions. Many thanks to all those companies and individuals who donated prizes to make our night a success.

"Focus on Ability" Short Film Award

Aaron Mavrokefalos from South Australia submitted a wonderful entry into the NOVA Employment "Focus on Ability" short film competition in October 2012. His film, titled, “Kate” starred DEBRA member and friend Kate Turner.

Aaron’s film won him $1500 by placing runner up in the NOVA choice category. Aaron’s film was viewed over 5,000 times from more than 50 countries at the time of judging. Congratulations and thank you to Aaron, Kate and everyone else involved in the making of the short film.

Pictured below; Martin Wren (CEO NOVA Employment), Aaron & Kate


Masonic Assoc Donation

Back in early 2012 our DEBRA representatives in NSW were approached by Arthur Macken from No. 27 District Masonic Association to seek authorisation to hold a trivia night for EB.
 
They held their trivia night back in July, and from all reports a great night was had. They raised $1250 for DEBRA, which was then matched & doubled by MasoniCare to an incredible amount of $2500. This also had a knock on effect with St George Leagues Club (where the trivia night was held) donating a further $3000.
 
A total of $6750 was donated.  Mary from DEBRA received the cheque from MasoniCare and St George Leagues Club (pictured below).

Many thanks to Arthur for instigating such support for our EB members.


 


Shoes for Children with EB

We have just become aware of an online shoe store, Pedors, which has shoes specifically designed for children with EB. Go to www.pedors.com or go to www.fitnwellfootwear.com
for more information.


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