National EB Dressing Scheme
The Dept of Health and Ageing and the Federal Minister for Health have confirmed that the National EB Dressing Scheme will continue to be funded into the future, past the current funding end-date of Dec 2013. This scheme is no longer subject to an end-date for funding.
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.
The Dept of Health & Ageing, BrightSky Australia and DEBRA Australia are all working hard to ensure all relevant information is updated and made available and communicated in full as soon as possible.
eb Cross Country Adventure Ride
DEBRA is proud to announce the new eb Cross Country Adventure Ride 2013, to raise much-needed funds for DEBRA to support families in Australia living with Epidermolysis Bullosa (EB).
13th – 27th April 2013 is set to be a unique cross-country bike tour taking in some of Queensland’s most spectacular locations; Mount Perry > Town of 1770 > Nebo > Whitsundays > Charters Towers > Richmond (Dinosaur museum / trail) > Mc Kinley (Walkabout Creek Hotel) > Kynuna (Blue Heeler Pub) > Lark Quarry > Stone Henge > Adavale > St. George > Darling Downs.
If you would like to join the ride, or sponsor this project, please email firstname.lastname@example.org or call Rob 0427 425 509 or Anja 0439 766 040.
International EB Care Registry
www.EBCare.org is the first and only web-based international patient-reported registry for Epidermolysis Bullosa (EB). Launched in February 2012, the goal of the registry is to gather much-needed, first-hand information about the prevalence, symptoms and cost of medical care, as well as the social and financial burden of living with EB.
The registry is helping the healthcare community better understand EB. By participating in EBCare.org and providing these valuable insights and details, patients are making a significant and important contribution to the understanding of EB.
Participation in the EB Care Registry is entirely voluntary and it is up to each individual to decide whether to log in and participate. Currently there are around 400 patients from a number of countries already signed up.
If you are interested in taking part in this worldwide collection of information for the betterment of advocacy, EB research and medical treatment, please go to www.EBCare.org or contact your local DEBRA representative for more information.
EB Nurse Program News
Our EB Nurse Sam (pictured left presenting at DEBRA's last conference) is still working hard for our members as a part of DEBRA’s National EB Nurse Program and doing an amazing job at attending to those 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 will be expanded to employ a nurse in Melbourne by the end of 2012, which we are very excited about.
The In-Home EB Nurse Program is still going strongly and has been very well received in South Australia. This important program has also been extended and has commenced in Queensland for three families with particularly high care needs. A survey will be completed at the end of the year to evaluate the program and if it is deemed appropriate to expand the program further, the program will be extended into other States in 2013.
The In-Home Nursing Program 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.
Donations & Grants
It has been an inspiring, motivating and exciting few months in terms of donations and successful grants for DEBRA. Here is a run-down on some of what’s been happening…
Maureen and Kenny from Qld held a Ten Pin Bowls Day in July in memory of Gavin O’Brien, to raise funds for DEBRA and create some awareness. As a result $694 was donated to DEBRA and more was donated to Gavin’s bowling team. Thank you to Maureen and Kenny for their support!
One of our members in Qld recently accepted a generous $600 donation cheque from the Floral Arts Society in Brisbane on behalf of DEBRA Australia. We would like to thank Robyn, the President, and all members of the society for their support. Pictured left: DEBRA member Kerry Wonders with Robyn, the President of the Floral Arts Society in Brisbane.
Shell Harbour Sunday Morning Bowls Club presented a $10,000 donation cheque to DEBRA Australia on Sunday 16th September. The club was closing down and gifting some of their funds to charity and DEBRA Australia was chosen as one of the lucky recipients. Thanks to the club for their generosity and support. Pictured is Mary with Phil Gale from the club and Billy O'Brien who lives with eb.
We have also received a lovely $4,518.50 cheque from the Long Reef Golf Club in NSW from a fundraiser they held. A big thank you to Lyndall Bacon for organising this donation, and to those from the golf club for their support.
Over 350 Ramsay Health Care staff, family and friends participated in the 2012 Sun Herald City2Surf on 12 August 2012. This year, Ramsay Health Care matched the funds raised by its staff for charity, donating over $10,000 to various causes. Following a representation from Kerrie Maddin, a Ramsay staff member working at Nowra Private Hospital, Ramsay Health Care also donated $1000 to the DEBRA Foundation. Kerrie is pictured above, second from right back row, with Ramsay staff from Nowra Private who participated in the 14km City2Surf event in Sydney.
We also received a donation of $230 from Caboolture East Combined Probus Club which is much appreciated!
Thank you to Link Healthcare Pty Ltd who have continued to support DEBRA’s monthly teleconference costs to enable the volunteer Board and committees to carry out regular meetings from various locations across the country. It has been a huge help over the years and this teleconference service is very valuable to us - we couldn’t do what we do for our members without this resource. As well as this, Link Healthcare staff also often chip in and donate money from time to time from fundraising activities that they organise in the workplace. Thank you Link Healthcare!
Thank you also to Dean Clifford who has also been busy in Qld attending various speaking engagements and forwarding on donations from various clubs, which has also been a huge help.
The ASDR’s 9th annual conference was held in May at Darling Harbour in Sydney, convened by Prof Dedee Murrell and featuring visiting eb expert Prof Woodley. It was a huge success and we are proud to announce that our very own Dr Zlatko Kopecki PhD won the Early Career Research Prize for his oral presentation at the conference. and the results have now been accepted for publication in prestigious international Journal of Investigative Dermatology. Congratulations Zlatko!
Pictured: Prof Dedee Murrell, Prof David Woodley & Dr Zlatko Kopetki at the conference.
The Cotton Ball
This black-tie Gala Dinner & Auction will be held in the heart of Melbourne at the award-winning Melbourne Convention and Exhibition Centre, on the 23 March 2013. The aim of the evening is to raise vital funds to provide a Victorian based nurse to support EB families.
The evening will include; a magnificent Victorian-produce three-course meal and hand-selected wines from across the state, A-grade entertainment throughout a fun-filled night; a unique and memorable charity auction on the night as well as silent online auction, ample opportunity for dancing and some other surprises. We guarantee it will be a great night!
For more information or to book tickets, go to www.thecottonball.com.au or phone 0407 196 665.
DEBRA NSW Trivia Night
This year's trivia night fundraiser will be held on Friday 26 October 2012 at St George Leagues Club, Kogarah.
There will be loads of prizes, an auction and of course, trivia. Entertainment will be from Les Girls Night Club in Kings Cross.
Tickets are $20 including supper and are available by calling Mary (02) 9546 5107 or Kylie (02) 9548 6553. Arrive at 7pm for a 7.30 start.
Research Grant Program
DEBRA Australia is pleased to call for applications for new research funding for projects aimed at improving the health and wellbeing of children and adults with Epidermolysis Bullosa (EB), in any of DEBRA's priority research areas. Funds of up to AUD $15,000 over 1 year are available for this grant. The deadline for application submission is 15 October 2012. Click here for further details.
International EB Awareness Week
International EB Awareness Week is coming up again at the end of October and offers us all an opportunity to work together as a global organisation to raise awareness of DEBRA and EB. As well as selling tickets for our multi-draw raffle you could also organise your own fundraising event to raise some funds and awareness of our cause.
Perhaps you could take gold coin donations for DEBRA instead of presents at your birthday party, or bake some goodies for workmates and charge a gold coin per muffin for morning tea.
Whatever the event, it can become a fundraising effort, and DEBRA appreciates any donations, no matter how small they may seem. The important thing is to spread the word about DEBRA and EB.
You have to be in it to win it! There are amazing prizes up for grabs this year, including a Panasonic 42” Full HD 3D LED LCD TV and an iPad 2 with wi-fi. $2 per ticket or 3 tickets for $5. We need ticket sellers as well as buyers so please contact email@example.com for more details of how you can get involved.
Short Film about EB
Take a moment and click here to watch this inspiring short film featuring Kate, one of our lovely members living with EB. It is a wonderful film that highlights that it is possible to lead an extraordinary life no matter what your limitations.
Watch it before Monday 15th October so you can vote for the film before the short film competition closes.
DEBRA members are such inspirational people, and Dean Clifford, pictured above, is no exception. Recently, Dean, who is lives with severe EB, bench pressed more than twice his current body weight, an extraordinary achievement. This is what he recorded about the amazing event;
Tuesday 28 August 2012: “Well it's taken a while, but here it is. On Saturday afternoon I re-wrote the rules once again when I broke my record in the gym by bench pressing 137.5kgs. That now puts me at 202% of my body weight or just over double my current body weight. That by itself is something that very few in the world can do and nobody in the world would even think of trying to do that with skin like mine.
I'm still in shock by what I have been able to achieve. It has been a huge journey to get to this milestone. I was not sure if I'd ever get back to my previous record of 135kgs ever again let alone surpass it so quickly with this lift.”
We are amazed by Dean’s achievements and motivation, and he is a constant inspiration to us all. If you’d like to view the video or read more about Dean Clifford, go to his Facebook page and become a fan, http://www.facebook.com/pages
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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