Michael Fitzpatrick Awarded National Volunteer Award
Our own Michael Fitzpatrick was recently awarded a National Volunteer Award for 2012 from the federal members of parliament. This was presented by Greg Combet Federal MP on Tuesday 18th Dec and was awarded for “Long Term Commitment to Community Service Award for 2012” DEBRA nominated Michael for his unwavering commitment to getting better outcomes for families living with EB. We are very proud that Michael has been recognised in this way and believe the award is well-deserved. Michael is pictured here with Greg Combet and his son Connor.
Michael says of his nomination by DEBRA Australia;
"Thank you to DEBRA Australia for the nomination it was very unexpected and humbling to receive this and to hear the words used were very generous.
We do our volunteering out of passion and a desire to see things improved for those we are working for and by no way is it about personal recognition, but it is nice to have such great support from DEBRA and to be held in such regard by the organisation and have that recognised by others. This is really an award for all of the DEBRA Australia team who work so hard to make a difference and achieve what the team has over the years. I thank each and every one of them for the great work they do supporting DEBRA Australia and would like to share this with them. I am very proud to work with such a great team, I constantly tell everyone that we are a team and that the whole team are the ones that make a difference."
DEBRA Announces Inaugural Research Awards
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 left) 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 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 to our Research Grant Program page.
Josh Kent Completes his Gruelling Swim, Ride and Run for the Butterfly Kids
Joshua Kent is one tough South Australian cookie. He recently completed the intense Ironman Triathlon in Busselton WA on 9 December 2012. The Ironman triathlon is a gruelling event consisting of a 3.8km swim, followed by a 180km ride, topped off with a 42.2km run completed within a 17 hour cut off. Not only is it inspiring that Joshua was attacking this race at all, but even more inspiring for us is that he used this race to as an opportunity to raise donations for the In-Home EB Nurse Program run by the Little Heroes Foundation.
Joshua’s goal was to raise enough money to enable one local family to access this Nursing Program for 12 months which comes at a cost of approximately $12,000. Amazingly, so far Joshua has raised over $7600 for the Little Heroes Foundation. For more details on how Johsua went in this race, click here. Our thanks and admiration go out to Josh and everyone who supported him in completing this amazing event. Well done!
DEBRA NSW Trivia Night 2012
We held our annual Trivia Night at the end of October. The night was well attended by family, friends (friends of friends) and members. The night raised $6500 for DEBRA and Epidermolysis Bullosa. The night started off with Dean Clifford (pictured left) 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 such a success - Kylie Gibson
No.27 District Masonic Association Donation
Back in early 2012 we 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 affect with St George Leagues Club (where the trivia night was held) donating a further $3000.
A total of $6750 was raised and a donation cheque from No.27 District Masonic Association, MasoniCare and St George Leagues Club was presented to Mary from DEBRA (pictured left) - Kylie Gibson
Many thanks to Arthur for instigating such support for our EB members.
In-Home Nurse Program Expansion Announced
The Little Heroes Foundation has announced that it is expanding its In-Home EB Nurse Program into Victoria and Western Australia. Dr Zlatko Kopecki of DEBRA Australia says a review of the existing program, which operates in South Australia and Queensland, had shown children's wounds healed better and their quality of life improved.
"(The program) gives parents a much-needed break. In some cases, parents were able to go away for one day for the first time in five years," he said.
Little Heroes chief executive Katie Bridges said funding for the program had grown from about $72,000 to $160,000.
"We hope to make the program, and the Little Heroes Foundation, national," she said.
There was a news story about young Jessika Halfpenny from South Australia run in various newspapers across the country following the Little Heroes Foundation announcement. To read the story in full, click here.
Sammie's Albion Park Raceway Fun-Filled 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 much-needed funds for DEBRA. Sammie managed to raise a total of $1050 from the Raceway fundraiser. Thanks to Sammie and to everyone who attended to support DEBRA Australia that night.
Sammie had this message for us all following the event held in December;
"Thank you so much to everyone who supported me for this charity night that is so close to my heart.
The evening started off really well with great support from Sydney band ‘Forever Road’ rocking it out. With all my heart I want to thank the band for flying up from Sydney to perform as their act was cut short due to a power failure on the night.
The band also donated an electric guitar (pictured right) that will be continued to be raffled off at $10 a ticket over the Christmas period. Please if you ever hear of this local band playing in your local area please support them.
Unfortunately two races were cancelled due to the black out which was out of our control. But at the same time we were so thankful to receive $549.95 in the money tins, with some people putting in $50 notes.
Dean Clifford (DEBRA member & ambassador) and Samantha Hay (EB Nurse) walked around meeting guests, family and friends and Dean said he was honoured to be there and help out. He was thankful at how warm and caring the public were at the Greyhound Racing Association in supporting DEBRA. Final tally on the funds will still yet to be worked out from door entry and raffle.
With all my heart and tears in my eyes I thank everyone for everything. Means the world to me!!
(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)
DEBRA 2012 Raffle Winners Announced
The volunteer Pittsworth High School students (pictured left) and Principal drew the 2012 DEBRA Raffle on the morning of 19 November.
The lucky 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.
Pittsworth & District Campdraft Association Donates $4000 to DEBRA
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 and said, "It is lovely that a small community group can be so generous and help families out on a national basis." This news article ran in the Pittsworth Sentinel newspaper on Wednesday November 14.
Sue is pictured left receiving the donation cheque from Deb & Barry Standing of the Pittsworth & District Campdraft Association and Brian McLean from McLean Farms, major cattle donor for the Campdraft.
DEBRA is very grateful for the Association's donation, and the generosity of their organisation, the cattle donors and the sponsors of the Campdraft.
Gremmo Homes' Footy Tipping Fees donated to DEBRA in memory of Rebecca Brewer
Richard Gremmo (pictured left 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. Richard explains how he came to be involved with DEBRA below;
We first became aware of the important work which DEBRA does to support those living with EB after reading an article about Rebecca Brewer in The Daily Telegraph. Each year we manage a football tipping competition amongst our friends and work colleagues in which we donate a portion of the entry fees to a charitable cause. In 2011, through our association with Rebecca we decided that our football tipping charity would be DEBRA. After becoming aware of the great work DEBRA undertakes in the community our winning tipsters have also chosen to donate some of their prize money also. Thousands of businesses and families enjoy the community spirit of tipping competitions around the country each year and we believe involving a charity in these competitions is a simple but effective way of not only raising much needed funds but also increasing community awareness.
National EB Dressing Scheme Update
It gives us great pleasure to be able to share with you some exciting news and changes regarding the National Epidermolysis Bullosa Dressing Scheme (NEBDS) in Australia that took effect from 1st October 2012.
> The Dept of Health and Ageing and the Federal Minister for health have confirmed that the scheme will continue to be funded into the future past the current funding end date of Dec 2013. This scheme is not subject to an end date for funding any longer.
> All age restrictions around Simplex Types will be removed allowing ongoing access to dressings for all eligible EB patients in Australia regardless of age and type.
These changes mean that many more people will now be able to apply to access the scheme subject to meeting the eligibility, co-payment and ongoing review requirements. This also means that less re- testing around inconclusive results will be required if the sub type is unclear.
This is a major milestone for the scheme in Australia and would not have been possible without the support of all those over the years who have provided information about how a fair and equitable scheme for EB patients in Australia could be done. This involved many families, medical professionals, industry, politicians and the community working together to make this a reality in the spirit of cooperation and in a team approach for a number of years. I would like to thank each and every person who has provided information, opinion, input and support for the scheme to date and making it an ongoing reality.
The Dept, BrightSky Australia and DEBRA Australia are all working hard to ensure all relevant information is updated and will be available and communicated in full shortly.
Film about EB wins runner-up prize in short film competition
Pictured (L-R): John Orcsik (judge), Laraine Frost, David Cameron (judge), Paula Duncan, Kate Turner, Linda Turner, Aaron Mavrokefalos, Lisa Shaunesy (judge).
Aaron Mavrokefalos created a short film about Kate Turner, a much-loved DEBRA member from South Australia, and entered it into Nova Employment’s short film competition, “Focus on Ability”. We are so pleased to announce that Aaron’s film won the Nova Choice Runner-Up Prize! We are so proud of Aaron, Kate and all the other people who worked hard to make that film a reality. The film has given great exposure to EB and DEBRA and has given a voice to all young people, like Kate, who live their lives to the full, in spite of their challenges.
Congratulations to everyone involved in the amazing project. The above photograph was taken at the awards ceremony held in Sydney in October.
To view the short film on NOVA’s YouTube channel, click here.
Below is an outtake from NOVA’s press release about the competition;
"For the 4th consecutive NOVA Employment has run the Focus on Ability Short Film competition. The competition is aimed at raising awareness of the abilities of people with a disability.
This year has been their biggest yet with 45 amazing films entered that really showcase extremely talented people with disabilities. With over $50,000 worth of cash and prizes this was a highly contested competition. There had been over 200,000 video views and on average 700 people voting per day from over 100 countries. The competition went viral and had seen 5000 comments all expressing inspiration, admiration and acknowledging a great insight into the life of a person with a disability.
The theme for the competition asked film makers to “Focus on the Ability” of people with a disability.
Aaron Mavrokefalos from South Australia submitted a wonderful entry titled, “Kate.” Aaron’s film won him $1500 by placing runner up in the NOVA choice category. Aaron’s film has been viewed over 5,000 times from more than 50 countries."
EB Cross Country Adventure Ride 2013
Roger Trevor Launches Book on Amazon.com
Roger Trevor, from DEBRA in SA, has published his first book. Roger has been a member of DEBRA SA for many years and was an integral part of setting up DEBRA Australia Inc back in 2005, along with being part of the team that organised the first national EB Conference in Adelaide in 2003. More information on the book is available in the link below. We hope our members will support Roger the way he has supported DEBRA over many years.