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The latest new from DEBRA Australia.
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Epidermolysis Bullosa (EB) is a rare genetic skin blistering condition that leads to a life of pain and disability. Skin can peel at the slightest touch, this is why we call the children the “butterfly children” as their skin is as fragile as a butterfly’s wings. Living with EB is likened to living with third degree burns that never heal, it is very painful and children are required to be bandaged every day to protect and medicate their wounds.
 
DEBRA Australia raises funds and awareness to support families living with EB to help make a difference.

April 2015

Amazing Support for EB Families

The Cotton Ball was again a huge success and on behalf of EB families all over Australia we can’t thank the dedicated team of volunteers enough who organise this incredible event in Melbourne. $377,000 was raised on the night to support families all over Australia living with EB. Thanks to the Wilkes family and their dedicated team of volunteers who make up the committee and all their supporters. More photos can be seen on The Cotton Ball's Facebook page.
The Cotton Ball Committee - Kylie, Andrew, Emma, Nina, Brock, Ash, Corey, Gav, Mick, Min, Jodi, Donna, Simone & Matty - Melinda absent from the photo.
Corey Wilkes, daughter Tilly and Sam Kekovich.
The Cotton Ball came about when a remarkable little girl called Tilly was born with EB. Tilly’s parents, Corey and Kelly, got together with their family, friends and work colleagues to make it all happen.

Other dedicated supporters Ricky Roberston and Rory Brockwell organised the third Tough Tilly Day which was a fun day out and a great success.  This event is held on an annual basis that takes place at the American Hotel in Echuca, Victoria. It was held again this year in January and raised $40,000! Another amazing event to help support families all over Australia living with EB. A huge thank you to Ricky and Rory!
Organisers Ricky Roberston and Rory Brockwell at Tough Tilly Day 2015

Brighter Days Festival

At the start of March the Brighter Days Festival was held. This awesome event is held in Bright, Victoria every year to help raise funds for children's charities and DEBRA Australia was one of the lucky charities chosen to receive a donation. The final tally from the weekend meant that DEBRA Australia received an amazing $65,000 donation. A big thank you to the Brighter Days team and everyone involved in making it possible.
Steve Dundon and the Brighter Days Committee presenting Simone from DEBRA Australia with the lovely donation.
Brett (on left) won the Harley Davidson raffle held during the Brighter Days Festival. (on right) Simone from DEBRA Australia and Steve Dundon Brighter Days organiser.

Recent Donations

Here are some of the other recent donations that we have received from generous caring people and groups from all around Australia. DEBRA Australia truly thanks you all for kind support and donations:
  • A big thank you to  Inner Wheel Australia A70 for their lovely $5,000 donation.
  • A High Tea & Movie fundraiser was held on Sunday the 15th of February at the Capri Theatre in Goodwood, South Australia with a total of $5,075 donated to DEBRA Australia! A big thank you to Cinzia, Laraine, Kate, Linda and all the volunteers who helped out during the day.
  • Ellie and her friends along with the help of her parents Sue & Trevor Jacobs arranged a Trash and Treasure Fundraiser for DEBRA Australia at their local markets in Marion, SA and raised $317.85. Here is a story supplied to us by Laraine about how Ellie decided to help fundraise for DEBRA:
"Our exposure to EB has been through my dear friend Cinzia Vuat who has been fundraising for DEBRA for many years. We have been fortunate to have participated in some of Cinzia’s fundraisers and met Kate Turner and her mum Linda. Such an impact Kate has had on Ellie that she chose to do a school project on her last year (Year 7) where they were asked to make a submission on who they would nominate to be Australian of the Year. Ellie chose Kate as having previously met her and understanding her disease and being inspired by her thought Kate to be a perfect candidate.

Ellie arranged to interview Kate and Kate willingly obliged, having only come out of hospital a couple of days beforehand. Ellie presented her submission to her classmates and teacher and showed the DVD Focus on Ability which had quite an impact on the other students. When Ellie came up with the idea of organising a fundraiser trash and treasure in January she decided it would be beneficial to give her friends the same opportunity and as a result we had 6 of her friends (all 13 years old) assist and support us today and also with the donating of goods. It is great not only for DEBRA Australia and the girls but also the public to see young people contributing constructively and actively in society"
Ellie, Kim, Sophie, Tayla, Kirralee, Kate & Alyssa

DEBRA Australia's Newest Ambassador

DEBRA Australia is pleased to announce our newest Ambassador, Matt Bevilaqua.

Matt Bevilacqua is an Australian Ironman and DEBRA Australia Ambassador who also suffers from EB Simplex. Despite struggling with the condition Matt's Ironman career has been a rollercoaster; first competing in numerous state teams for Tasmania and when he was just 16 years old Matt became the youngest person at the time to win the Tasmanian Open Ironman title and went on to win the race three years in a row. After completing school Matt chose to pursue his dream of becoming an Ironman and moved to Mooloolaba to train with the Michael King Ironman Academy.

Two years after his move Matt achieved his dream and made history by becoming the first ever Tasmanian to qualify for the Nutri-Grain Ironman series. After finishing 9th in his debut series last year Matt finished 7th in the 2014/15 Nutri Grain Ironman Series which qualified him for his third straight Series in 2015/2016.

As a child growing up with a family history of mild EB Matt became aware of the impact EB has on lifestyle and participating in sporting teams and other events. Matt feels privileged to be an ambassador for DEBRA as it will allow him opportunities to raise the profile of the disease, raise money for research and to meet children and families who courageously overcome the daily challenges of EB.

Welcome to the DEBRA Australia family Matt and thank you for all your efforts in helping bring awareness of EB to the people of Australia.

Happy Birthday to DEBRA Australia - 10 years old!

This year sees DEBRA Australia celebrating its 10th Birthday! Over the last 10 years we have been able to provide much needed support for many families across Australia living with Epidermylosis Bullosa. It is with your help by providing donations and raising awareness for EB in the community that this has all been possible and everyone here at DEBRA Australia can't thank you enough for everything you have been able to help us achieve.

Family Support Program

The Family Support Committee has been busy assisting EB families from all over the country with requests for various items. Amongst many applications, they supported a family through the Christmas period with extra In Home Nursing Services to ensure the primary care providers had a well-deserved break. Many of our families also received Christmas Hampers with compliments from a NSW Pastor - Brenden Brown. 
 
Sadly, one of DEBRA’s youngest EB baby’s passed away in January after a 13 week battle with severe EB. The FS committee have supported Luke and his parents during this time and they will always remain in our thoughts.  

It was lovely to see one of DEBRA’s newest members during the Christmas period. Lola Carr and her Mum and Dad, Matt and Nina flew home from NZ to visit family and friends. Lola has grown into a beautiful happy baby. 
Matt, Lola and Nina
If you have any enquiries about the Family support program, carer respite and sibling support please contact our Family Support Coordinator – Simone 0413 967 609 or via email ebfamilysupport@debra.org.au.

National EB Nurse Programme

DEBRA has set up its first adult EB Nurse program with St George Hospital in Sydney. This builds on earlier grants which facilitated the employment of  paediatric EB nurses in Brisbane and Melbourne. Negotiations are also in progress to establish a paediatric position in Adelaide. The St George grant will be for one year initially, with the possibility of extension.

After a competitive application process in which DEBRA participated, Margaret Norris has been selected to fill the adult EB nurse role. She will work closely with Professor Dedee Murrell and the multidisciplinary team involved in EB care. Margaret will be working every Monday and Friday at St George Hospital and can be contacted by email: margaret.norris@sesiahs.health.nsw.gov.au or her mobile phone on 0499 687 736.

Margaret will coordinate 3 monthly appointments in the Ambulatory Care unit at St George for those with severe forms of EB, who are at risk for skin cancer and anaemia and other systemic problems, as well as assisting with the care of individuals with milder forms of EB. A patient summary is reviewed by the multidisciplinary team prior to each Monday clinic, to plan what consults and tests need to be done, with the aim of having everything run smoothly and efficiently. A teledermatology service has also commenced for some patients with less severe forms of EB who live in remote areas. 
Margaret Norris - EB Nurse at St George Hospital Sydney

Skin Cancers and EB

Professor Dedee Murrell has asked us to remind the EB community about the importance of  regular skin checks for squamous skin cancers  (SCCs), especially in teens and adults with recessive dystrophic EB and junctional EB. She  commented:  " It is hard for some EB patients to understand why we need to be so careful to pick up SCCs in them so early and to remove them as quickly as possible. Although ordinary skin cancers are very common in the Australian population, the behaviour of squamous skin cancers  (SCCs)  in the setting of EB is very different, as in EB the skin, for various reasons, allows these cancers to spread much more rapidly than normal skin. "  

Recent research involving a team of scientists from Cambridge, as well as Professor Murrell, suggests that certain bacteria in the wounds increase the likelihood of SCC developing. Hence, regular bathing to change the dressings and use of bleach and salt baths to try to reduce bacterial load in EB is important. Routine use of antibiotics is not recommended due to the emergence of resistant strains. 

Eliza and Charlie

This lovely photo was sent to us of Eliza with her new assistance dog Charlie that we just had to share with everyone. Here is the letter Eliza wrote to us:

"Here's a photo of Charlie and I. Charlie is 13 weeks old and is in training to be my assistance dog. He's already busy learning manners and new words like sit, stay, down, up, walk and roll over. When he is 12 months old he will go to puppy training university in Sydney and should return 6 months later with specific training suitable for my needs. He should be able to carry my school bag, help me stand up, fetch things and be my companion.
From Eliza" 

Thanks for the great photo Eliza and all best with Charlie. 

EB Research Program

Congratulations to the following successful research recipients following the 2014 research awards: 
  • Dr Caroline Mahon and Associate Professor Orli Wargon : A retrospective study of the diagnostic relevance of skin biopsies taken for immunofluorescence mapping (IFM) and transmission electron microscopy (TEM) in making a diagnosis of epidermolysis bullosa (EB) subtype in newborns and infants suspected of having EB. Award $24,700.

Associate Professor Orli Wargon
  • Dr Zlatko Kopecki and Prof Allison Cowin: Study to determine if improving the skins barrier function reduces susceptibility to blister wound infection. Award $15,000 (included $5,000 raised from donations for EB research in South Australia).

Dr Zlatko Kopecki
  • Dr Anna Steer and Ms Lauren Weston: Teledermatology Satisfaction in Children with Epidermolysis Bullosa. Award $4,000.

Lauren Weston -  EB Nurse at Melbourne Royal Children’s Hospital

EB Cross Country Adventure Ride Update

Only two spots left on the EB Cross Country 2015 Adventure Ride.  If you don’t want to miss out go to www.ebcrosscountry.com.au for more information.  

Fifth National Family and Children’s EB Camp and Conference 


Sunshine Coast 
11th – 13th September 2015


Come and join us at the EB Camp. There will be lots of fun for the kids and lots to learn for the adults, parents and carers.  There will be entertainment, trade displays, workshops and guest speakers.  This is a great networking opportunity not to be missed. For more information and to register click here.
Chip in some money with some friends to buy a ticket or two to go into the draw to win the trip of a lifetime of your choice! Who wouldn't want to win a holiday, a motorbike or a Mitsubishi car of their choice to the value of $25,000?

For more information check out the DEBRA Australia Art Union

Membership


The AGM is scheduled for 13th September 2015 to be held during the EB Camp at the Sunshine Coast.

To have you say as a Member sign up here.

Upcoming Events

  • TP Insurance Brokers Charity Golf Day - Friday 22nd May 2015
  • EB Cross Country Ride - 24th May - 7th June 2015
  • EB Health Professionals Conference - Friday, 11th September 2015 - Brisbane
  • EB Camp - 11th - 13th September 2015 - Pelican Waters, Sunshine Coast QLD
  • AGM -  11:15am Sunday 13th September 2015 - Pelican Waters, Sunshine Coast QLD
The printing of DEBRA News is kindly donated by Nu Skin.

 
 
 
 
Copyright © 2015 DEBRA Australia, All rights reserved.



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