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The latest news from DEBRA Australia
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August 2014

Raising Funds for DEBRA 


The Protectors Insurance Brokers Pty Ltd, based in Liverpool, Sydney, were very proud to be able to assist the great work that DEBRA Australia does and continues to do by raising monies through their 13th Annual Charity Golf Day. On the 29 May 2014, under superb winter blue skies, around 100 Golfers played for fun at Macquarie Links Golf Club, and in throughout the day raised almost $28,000 with sponsorships, donations and raffles/auctions. David Michell, Director at The Protectors Insurance Brokers Pty Ltd, chose DEBRA Australia as the Charity this year because he had some close friends experience the terrible condition first hand with the loss of their 11 week old Daughter, and realising that DEBRA Australia needs all the help that it can find, it was fitting decision to help out.
The Protectors Brokers Insurance P/L event: David, his team from TP Insurance Brokers, Mary (DEBRA Australia Board Member) and Silke & Justin (Eliza Braitling Foundation)

Jon’s Marathon to Raise Funds for DEBRA


A few short word from Jon:

I was inspired to run for DEBRA after watching the piece on Tilly on channel 10s 'The Project'. Having 3 little healthy girls of my own this story really stuck a chord with me and I wanted to help.  As part of a European trip in 2014 I set about looking for a suitable challenge in which I could incorporate my love for running with a bit of adventure and raise some funds.  I chose the Marathon du Mont Blanc as an excuse to have to take my family to the French Alps on the way back from a trip to the UK to visit family.

The 42km mountain race is run on trails at altitudes including over 2500 metres of ascent and 1400 metres descent.  We arrived in Chamonix a couple of days before the race to be advised of severe weather warnings for race day. As the day arrived, the warnings got worse and the course finish was changed from 2300 m up on a ridge (to which the only was down via cable car) to the town centre as the organisers were worried about the lightning and how people would get back down (cables cars don't run in thunder storms!)

I was also a bit worried about my kit...I hadn't brought any gloves or hat as was expecting a relatively warm day. The previous 5 years had seen temperatures of around 25c...this year it was 7c in the town centre, even before we began climbing. I was aware the weather is changeable in the mountains but wasn’t quite prepared for it being as wild and cold as it turned out to be.

About half way up the biggest climb it started snowing/sleeting and it was getting bitterly cold (and wet) as we got higher and higher. Nearing the summit I was shivering and teeth chattering whilst running - a very strange sensation and I was getting quite concerned about hyperthermia and even making it to the finish. 
 
I was feeling quite sorry for myself until a French gentleman who was trying to pass me managed to put one of his trekking poles through his left foot! The poor chap was in agony - this focused my attention on getting help and stop feeling sorry for myself. I made it to the top of the Col Des Possettes and got help (with very limited French!). All the advice says to stop, wrap up warm and have a hot drink,  but I decided to run straight past the aid station at the top of the mountain to get off the mountain as quickly as I could. At least I was half way! I gradually started to warm up during a very wet, slippery and dangerous decent.  In the difficult up and down 20kms that followed I drew on motivation from all the people that had supported me through donations....I just had to get round for them and it helped put a bit of wet and aching limbs into perspective.

I managed to finish the race in 7hrs 10 and promptly had a beer at the finish line - apparently a French tradition which I wasn’t going to argue with. This was the first beer in six months of training and not surprisingly I was asleep back at our chalet not long after.

Here’s the link to the official YouTube film of the best bits of the run: click here

Chamonix is a truly beautiful place and I feel very privileged to have been able to run through its mountains whilst raising a few funds for DEBRA Australia. I enjoyed every minute. The one question now is...what am I going to do next?

Thank you for all your support.
Thank you Jon for raising awareness and funds for DEBRA!

EB Research


Dr Zlatko Kopecki was awarded the DEBRA Australia International Travel Fellowship grant and recently attended the Symposium on Advanced Wound Care/Wound Healing Society (SAWC/WHS) Meeting in Orlando, Florida, USA, and Society for Investigative Dermatology (SID) Annual Meeting in Albuquerque, New Mexico, USA in April-May 2014. Dr Kopecki was able to present his work on The Role of Flightless Protein on the Development of Squamous Cell Carcinoma and gain invaluable feedback from experts in the field. This feedback and new collaborations formed will immensely help shape our future research and development of therapy for patients with EB-SCC.

In addition to attending two meetings Dr Kopecki also had the unique opportunity to spend time at the laboratory of their  collaborators Prof Mei Chen and Prof David Woodley, at the University of Southern California, Norris Comprehensive Cancer Centre, both of which are EB experts and are current leaders in development of Col7 therapy for patients with RDEB. In their laboratory Dr Kopecki was able to lean new research methods for new projects that he will be undertaking in the near future.

For more information about the 2013 Research Grant: click here.
Dr Zlatko Kopecki in the laboratory in Adelaide.

EB Family Support Program


Our Family Support Coordinator Simone from Melbourne has been very busy lately visiting families in Perth, Sydney and Brisbane.  DEBRA along with the Eliza Braitling Foundation, Young Care Australia and Little Heroes Foundation have made it all possible to provide additional support to existing and new families.  The visit to Perth has opened up a new network of health professionals and families which Simone will now keep in touch with.  A new component to the Family Support Program is the parent’s respite and sibling program due to funding from the recent TP Insurance Golf Day held in Sydney.  This will allow parents and siblings caring and living with children with severe EB to have that much needed break.
Simone and Narissa (Wound Care Nurse - Perth Hospital)
Silke from the Eliza Braitling Foundation and Simone visiting a new family in Perth - Atika with baby Hani.
Ellie visiting a QLD farm for a week as part of the new Sibling Program.
The DEBRA Family Support Program was also able to provide the Manzano family with a much needed holiday to the Gold Coast QLD. Vanessa is a single mother of 2 young children and also has daily struggles of living with Junctional EB.  

Vanessa, her Carer and 2 children - Ryan & Charlotte stayed at the Gold Coast Zagame’s Paradise Resort for one week and said “it was awesome!”. Ryan & Charlotte spent their time swimming between the resorts two water parks and the new ice skating rink which was loads of fun. The Manzano’s also visited Movie World, Sea World & Dream World and Ryan had the opportunity to catch up with his favourite Uncle to go jet skiing.
The Manzano family enjoying Movie World while on their holiday at the Gold Coast.

EB Dressing Scheme Nurse visits Japan 


Louise Stevens from Bright Sky Australia P/L was recently invited to speak at the Japanese Society of Wound, Ostomy and Continence (JWOC) Management Conference.  The presentations were extremely well received and there was lots of positive feedback.  The health professionals were very interested in hearing how the EB dressings in Australia were managed and also about the nursing care and education.  

Louise stated that culturally things are so different there that it is hard for them to equate to our system and plan how they will improve their EB care.  The language barrier was also an issue but thank goodness for the lovely interpreters.  Louise also had the opportunity to meet members from DEBRA Japan and health professionals like Professor Tamai who were very grateful for the information gained and keen to keep in touch.  Louise said it was an incredible opportunity that had been provided and looked forward to staying in touch with the new network.
DEBRA Japan President Keiko Miyamato, National EB Dressing Scheme Nurse Louise Stevens and nurse Yukiki Miura.

Future Generations Fund


DEBRA Australia has been chosen as one of the charities that will benefit from a new Future Generations Fund.  If you would like more information you can check out their website: click here or to look at the Prospectus click here (7.8MB PDF reader required)

DEBRA A SA Windup


DEBRA A SA INC held a fun filled evening to thank our families and supporters as we close one  chapter and move onto another exciting venture as one big family under DEBRA Australia. While there was a tinge of sadness closing our state branch as we have become one big family over the years, we are all looking forward to the future.
SA families living with EB from left - Dick, Angela, Roger, Ben, Kate, Shirlee, Dorothy, Jennifer, Hayley, in front - Karen & Jessika.
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Click Here to Donate to DEBRA Australia
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 raise funds and awareness to support families living with EB to help make a difference.

Upcoming Events

 
EB Awareness Week
25 - 31 October 2014

SA Quiz Night and Art Auction
8 November 2014
Contact Laraine for more information:

lararich@adam.com.au

Tough Tilly Day
3 January 2015

The Cotton Ball

14 March 2015

EB Cross Country 2015
26 May - 19 June 2015

National EB Camp
11 - 13 September 2015

Brighter Days
2015

Thank you to our recent donors

  • Rotary Club Mont Albert & Surry Hills
  • Todd Foundation
  • Stannard Accountants
  • Wilson Foundation
  • The Hose of Windsor
  • Quota Wynnum Manly
  • Fredrick Gordon P/L
  • Ann Powell
  • Diane & Phil Locke
  • Xantha Maree Foundation
  • Eliza Braitling Foundation
  • Youngcare
  • Chris Byrne

2014 Follow Your Dream Announcement


The successful recipient for the 2014 Follow Your Dreams Grant is 21 year old Bianca from Melbourne. 

Bianca’s dream is to swim with the dolphins and have a holiday with her mother. Bianca would love to give back to her Mum for all the love and support she has given her and to also get away from the daily stresses of living with EB. 

Congratulations Bianca you are off to the Gold Coast and SeaWorld in October to fulfil your dream!

New Website


The new DEBRA Australia website is now up and running. Some pages are a work in progress and will be completed soon. If you have any feedback or suggestions by all means drop us and email. 

Memberships Online


If you would like to subscribe or become a member of DEBRA Australia you can now join up via the new DEBRA Website. To head to our Membership sign up page, click here.

Annual General Meeting
 

The Annual General Meeting is being held Friday 5th September 12 midday via teleconference facilities. If you are a member and would like to join in please email secretary@debra.org.au for more information.

Dine & Donate


Would you like to Dine & Donate for DEBRA?   Anyone can do it, just need some friends, colleagues and some food.  If you would like to support DEBRA and hold an event big or small in International EB Awareness Week which is the last week of October, please go to the DEBRA website for more information and to register your interest.

Raising Awareness for DEBRA


Amara, Katie, Rhiannon and Emily gave up their weekend to raise awareness for DEBRA at their local shopping centre in Redland Bay. On behalf of everyone at DEBRA Australia we would like to thank you for all your efforts at helping raise awareness of EB.

EB Nurse Presents at AWMA Conference

 
Samantha Hay our lovely EB Nurse based at Brisbane Royal Children’s Hospital attended the 2014 Australian Wound Management Association (AWMA) Conference to present a poster on “Meeting patient needs with a dedicated Epidermolysis Bullosa (EB) Nurse.

Sam thanked DEBRA Australia for the opportunity to attend the conference as she found it a very beneficial in regard to networking and educational. Her poster got a lot of attention and many people asked about the EB Nurse role and working with children in QLD.
Samantha presenting her EB Poster the 2014 AWMA Conference.
Thank you Newman's Own for supporting the EB Nurse Program  

Neonatal Box


There are now National Neonatal EB Boxes in place which has been introduced as an initiative between Molnlycke Health Care, BrightSky Australia and DEBRA Australia.  The aim of this initiative is to provide best practice information, education and resources to clinicians who are looking after newborn babies with suspected EB. For more information go to Neonatal EB Care.

EBCC2015 Survey has begun


The survey for EB Cross Country 2015 has now begun, starting out of Alice Springs. A big thank you to all those volunteers who are taking part in the survey.

To keep up with the latest updates on the survey and see some great photos during the trip check out the EB Cross Country Facebook page.

EBCC2015 Survey has begun


The survey for EB Cross Country 2015 has now begun, starting out of Alice Springs. A big thank you to all those volunteers who are taking part in the survey.

To keep up with the latest updates on the survey and see some great photos during the trip check out the EB Cross Country Facebook page.
The printing of DEBRA News is kindly donated by Nu Skin.
 
 
 
 

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