We would like to send out a HUGE thank you to our #teamDEBRA runners in last weekend’s City 2 Surf in Sydney. We had 12 runners participating on the day and together they raised a whopping $19,195.67 in our first ever team event for DEBRA. With the generosity of their donors we are able to deliver vital services to our DEBRA families and continue to grow our support programs.
These 12 individuals have created a voice for EB and with their help we have reached another 295 people who donated to DEBRA through this event. Congratulations to Angela Bradley who was our highest fundraiser raising an enormous $4,597.25 which will help kids just like her son Adam who went along for the run on the day and our award for best photo from the day goes to Catherine Corcoran. You can join a #teamDEBRA event in your state and help us get even closer to our mission of supporting families living with EB and one day hopefully finding a cure. Click here to see what events are coming up. To see more photos from the day, check out our Facebook Page.
|
|
|
|
Part of the amazing #teamDEBRA
|
|
|
Sally C and Sally M hit the finish line
|
|
|
|
Kylie with her City2Surf Medal
|
|
|
Catherine Corcoran winner of best photo
|
|
|
The DEBRA Family Support Committee and EB Nurse in Melbourne have been extremely busy over the past 3 months supporting 2 new families who have recently become part of the EB community. Welcome gorgeous Gabriel and Charlotte along with parents Martina, Jess and Shane. Gabriel is 12 weeks old, Charlotte is 6 weeks old and both were born with different types of EB.
|
|
|
|
Martina and Gabriel
|
|
|
Shane, Charlotte and Jess
|
|
|
What brings Australians together?
Whether it’s having a BBQ, going out for dinner or catching up for some sweet treats there is one thing that we all enjoy doing and that’s having a catch up over some great food.
During the month of October, we are asking all our fellow foodies to get involved with Dine and Donate in support of the precious ‘Butterfly Children’ and DEBRA Australia.
There are over 1000 people currently living in Australia that are affected by ‘the worst disease you’ve never heard of’ Epidermolysis Bullosa, also called EB. EB is likened to having 3rd degree burns and the skin blisters and breaks at the slightest touch. EB sufferers go through extremely painful 3 hour dressing changes every second day. We need you to band together and help the precious Butterfly Children during the month of October by participating in Dine and Donate.
|
|
|
Not long now, get in and get your tickets before they sell out!
|
|
Exciting News!
DEBRA Australia will be holding a Ball in Sydney in August 2017. If you would like to be part of the organising committee to help create this new exciting event or can donate any prizes - please contact Bianca: bianca.ciccia@debra.org.au
|
|
Big thank you to the Little Heroes Foundation
 A heartfelt thank you to the Little Heroes Foundation who have generously supported the In Home EB Nurse Program since 2012 and are continuing to support families in South Australia. This program has supported up to 19 families on a national basis and has been an invaluable resource. Providing a dedicated nurse to assist with gruelling dressing change regimes not only helps the children’s health improve but it also improves quality of life for the whole family.
Lola (from NSW) has been a part of the In Home EB Nurse Program which has made a huge difference to their family over the last two years.
|
|
Melbourne Market Charity Golf Day
The 2016 Melbourne Market Golf Day, held in mid April this year brought over 120 players to the stunning greens and fairways of the Heidelberg Gold Club. It exceeded all expectations and has been heralded as the most successful golf day the market has ever hosted. DEBRA Australia was the fortunate charity group chosen by the Melbourne Market to receive the proceeds made during the event, which raised over $70,000. Thank you so much to everyone involved in making the event possible, this amazing contribution helps support families all around Australia effected by EB.
Remember to save the date for the 2017 Melbourne Market Charity Golf Day - March 24, 2017. Check out all the details on our website.
|
|
|
|
The Freshmax Team
|
|
|
Craig Bradley (ex AFL player) and John Platten (DEBRA Ambassador and ex AFL player) catching up with Eliza, Simone, Ellie and Mel from DEBRA.
|
|
|
|
The Melbourne Market Golf Day Committee and
EB Family Support Coordinator Simone
Left to Right: Mick Scro, Dom DiMattina, Pat Galle, Mark Walkley, Joe Amalfi, Simone Baird, Rebecca Curcija, Sally Piper, Chris DiMattina.
|
|
Zonta Club of Toowoomba Garden City Inc. - Grand Home’s Tour
Toowoomba locals thoroughly enjoyed a day out on the Zonta Grand Home’s Tour earlier this year. Thank you to the lovely volunteers who organised the day and generous home owner’s who opened their doors for the event. The generous donation of $6,000 has been used to support the In Home EB Nurse Program.
|
|
|
|
Helen (Chair of Zonta Club of Garden City Inc), Lola and Nina attending the luncheon on the day.
|
|
Other Supporters
Thank you for your amazing generosity:
- Rotary Club of Mont Albert & Surrey Hills $1,000
- AWCI Gala Ball held which raised over $2,000 on the night
- Todd Family Foundation $10,000
|
|
EB Research in the Spotlight
Vote Now! It will only take you one minute to help raise awareness for EB.
Research studies supported by DEBRA Australia have received unprecedented attention at the University of South Australia - Images of Research Photography Competition. Dr Zlatko Kopecki and colleagues are developing novel therapy options for treatment of skin and mucosal blisters in EB patients. In order to raise awareness of EB in the community the research team have submitted a research image “Healthy Blossom†into the competition. Out of the 120 images, 20 were selected for the People’s Choice Award Nominee – including this image of a healthy human gut “Healthy Blossom†which, looks like a floral arrangement print, and is used as a healthy control in studies looking at the blister gut sections of EB patients. This image is on display as part of the South Australian Living Artists Festival (SALA), at the Kerry Packer Civic Gallery, from August 10 to September 2. Help us promote EB research by voting for “Healthy Blossom†image (bottom right corner) on the following link.
|
|
|
|
"Healthy Blossom"
|
|
EB Health Professionals Day
Attention all Health Professionals – please save Thursday 17th November in your calendar for an informative EB Health Professionals Education Day being held in Melbourne this year (2.30pm – 8.30pm). The focus will be on the new EB Skin Cancer Guidelines with the main guest speaker being Dr Jemima Mellerio (Consultant in the Dermatology Department of Great Ormand Street Hospital, London).
More information and a programme will be available via the DEBRA Australia website closer to the date along with the registration process. If you have any questions at this stage please email admin@debra.org.au
|
|
DEBRA Australia Membership
DEBRA Australia is pleased to announce that the DEBRA Australia Memberships are now open for the 2016/2017 period. Membership is free and new members are more than welcome!
For those that are already Members of DEBRA Australia remember to renew your membership for the 2016/2017 period. Thank you for being part of a great organisation to support families living with EB.
The benefits of become a DEBRA Australia member includes:
- All members are entitled to attend General Meetings, either in person or by proxy, and vote on any occasion when a vote of members is required. This includes, but is not limited to, the election of Directors at the Annual General Meeting of the Company.
- Members will be eligible to receive newsletters, invitations to events, information regarding grants and other relevant information from time to time however since membership is free members are encouraged to also become Subscribers to DEBRA Australia as this $10 fee assists to defray costs of distribution etc.
- All the rights and responsibilities of members are outlined in sections 3, 4 and 5 of the Memorandum of Association of DEBRA Australia Limited.
So what are you waiting for, follow the link below and sign up to become a DEBRA Australia member today!
|
|
DEBRA Annual General Meeting – 12th September 7.30pm EST
DEBRA AGM will be held via teleconference at 7.30pm EST. More details will be sent out to members next week. If you have any questions or wish to attend please email secretary@debra.org.au.
|
|
Date Claimers
2016
- 20th August: Australasian Blistering Diseases Foundation (ABDF) Ball in Sydney contact info@blisters.org.au for more info.
- 12th September: DEBRA AGM will be scheduled via teleconference at 7.30pm EST.
- 25th September: TAB Football & Netball Charity Day in Bendigo
- 25th – 31st October: EB Awareness Week
- October & November: Dine & Donate for DEBRA
- 5th November: The Cotton Ball Adelaide SA
- 17th November: EB Health Professionals Day (Melbourne)
2017
- 2017: Million Dollar Run - Check out Andrew's Website, Facebook or Donate
- 7th January: Tough Tilly Day
- 24th March: Melbourne Market Charity Golf Day
- August: New DEBRA Australia Event
|
|
|
|
