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The latest news 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.

February 2016

Eliza meets MasterChef judge George Calombaris

Article by Simone Baird

In October Eliza was going through a rough time with pain and was transferred to the RCH Palliative Care team for better management. The Palliative Care team knew Eliza loved to bake and that she was a keen follower of Master Chef so they contacted George Calombaris and asked if he would meet her. George arranged for Eliza, Ellie & I to have a private sitting in his kitchen along with a team of his staff. They prepared several different meals, desserts and mocktails to taste. They also made a cake which George & Eliza decorated together.    

George was amazing! He wasn’t rushed, asked her all about food, likes, dislikes and favourite dishes. He didn’t ask about EB and pain issues, it was all about her enjoyment to cook. It was a happy place!!

Eliza loved her visit and was always a fan of George but thinks he’s even nicer now. She says he’s pretty cool! 
Eliza meets MasterChef judge George Calombaris

The Cotton Ball 2016

The Cotton Ball 2016 will be held at the Adelaide Convention Centre in South Australia on November 5th, 2016  to raise much needed funds to support families living with EB. Tickets are now available for purchase via TryBooking. For all the latest updates on the event, check out The Cotton Ball Facebook Page

If anyone has any auction items they would like to donate for the event please email admin@debra.org.au and we can forward on the information.

The Million Dollar Run

The Million Dollar Run is an amazing fundraising campaign being done by DEBRA Australia Supporter Andrew Biszczak. Andrew will be doing a 2,600km Solo Charity Run from Adelaide to Brisbane, which equates to him doing 5 Marathons a Week for 3 Months with one goal – “To Raise A Minimum Of 1 Million Dollars For The Courageous and Inspirational Butterfly Children Around Australia”

Starting on the 31st of July 2016 Andrew will leave Adelaide with his wife, 8 year old daughter and Support Crew for the 2,600km journey to Brisbane, helping raise funds and awareness for EB around Australia.

You can support Andrew by following the EverydayHero link bellow and help donate towards Andrew’s goal of $1 Million. If you would like to keep up to date with Andrews progress as he prepares for the run, give Andrews Facebook Page a like:www.facebook.com/themilliondollarrun

DEBRA Australia is incredibly thankful for the amazing effort that Andrew is putting into his fundraising campaign, we wish him all the best in his training and can’t wait to see him cross the finish line in Brisbane.

Donate Now

EB Family Support Program Update

The Family Support Committee has been busy working with families from different states and have assisted with various needs. Some of our families have had their little ones start school this year and despite the challenges they face with EB they are keen to make new friends and adapt to school life.
Beau Willcocks 1st day of school at Greythorn Primary, Melbourne.
Cockram Constructions from the ACT have a workplace program which generously gives back to the community. During the extreme heat in January they dedicated two solid weeks towards a “backyard blitz” for EB sufferer Lewis Mataczyna. Site Manager Grant Watson coordinated the blitz and arranged for all materials and labour to be donated. Lewis parent’s said they’d never seen him so eager to get out of bed each morning to watch his backyard turn into a new safe haven for him to play in and enjoy.

Cherie said, “We are all absolutely delighted with the beautiful and functional back garden, and Lewis has never been happier”.

DEBRA and the Family Support Program sincerely thank Cockram Constructions, Grant Watson and his team for generously donating their time and energy towards Lewis’s project.

Grant Watson (third from left) and his team of workers who completed the wonderful back yard make over with Lewis and his parents Cherie and Henry (right of photo)
Before
After
If you have any enquiries about the Family Support Program, carer respite and sibling support please contact our Family Support Co-ordinator – Simone on 0413 967 609 or via email ebfamilysupport@debra.org.au

DEBRA International's Guidelines for skin cancer management in EB

DEBRA International has recently published best clinical practice guidelines for the management of squamous cell carcinoma (SCC) in EB patients. These guidelines were developed following a systematic literature review and international expert consensus, which included Australian experts Dedee Murrell and Susan Robertson.

The aim of these guidelines is to best inform health care professionals and patients living with EB on diagnosis and management of SCC to improve patient outcomes and quality of life. You are receiving this information sheet as DEBRA Australia is passionate about informing EB patients and families about the latest available resources and we hope to encourage you to read these guidelines and discuss them with your dermatologist and other treating doctors.

A full copy of the guidelines can be accessed via this link. Please note DEBRA International plans to update these guidelines every three years. For a main summary findings of the guidelines click here. While DEBRA has made its best efforts to prepare this summary, this does not replace the more detailed advice provided in the guidelines and by your treating clinician. It is the individual's responsibility to fully inform themselves further.

National Education Symposium On Blistering Diseases

On Saturday, 6th Febryary 2016 the National Education Symposium On Blistering Diseases was held at the St George Hospital in Kogarah, NSW. The event was used to advance medical professionals knowledge in blistering diseases, including EB. One of DEBRA Australia's EB Nurses, Margaret Norris was one of the guests speakers during the event talking about the topic 'The Role of the EB Nurse' in the Multi-Disciplinary Management of Adult EB Patients. The Australasian Blistering Diseases Foundation was registered as a charity in 2006, founded by Prof Murrell and money that was raised during the event  went to supporting ongoing research and education on blistering diseases including EB.
DEBRA Australia EB Nurse Margaret Norris talking about the Role of the EB Nurse.
Dr Minhee Kim presenting on the Multi-Disciplinary Management of Adult EB Patients.

Donations

  • Big thank you to JPS Health & Fitness who donated $5,652 that was raised during their Trivia Night.

 
  • DEBRA Australia supporters Adrian and Linda are running a 10km and half marathon in Canberra in April  to support baby Lola, who has EB and using the opportunity to help raise funds for DEBRA Australia. Their EverydayHero page - Cashola for Lola has currently over $2,300 in donations! Follow the link through and help support them, if they reach their goal of $5,000 Adrian has promised to run a Marathon.  

EB Research Documents

Two research documents have recently been released by Professor Dedee Murrell:

DEBRA Australia Research and Education Travel Fellowship

DEBRA Australia is pleased to call for applications for its 2016 Research and Education Travel Fellowships. These grants are intended to foster professional development for early career scientists or health professionals to improve the health and wellbeing of children and adults with Epidermolysis Bullosa (EB).

DEBRA aims to make at least one award each year to a nurse involved in EB care. In 2016 up to $6,000 will be available for distribution. The number and mix of Fellowships awarded in each round may be varied at the discretion of DEBRA Australia’s Board of Directors, depending on the applications received. The maximum amount that will be awarded to an individual for travel in Australia or New Zealand will be $750 and the maximum for travel to other overseas locations will be $3,000. For the full guidelines and submission details click here.

Successful 2015 Research Grant Recipients

Congratulations to the following applicants who received Research Grants in 2015:
  • Dr Sharleen Hill  & Professor Dedee Murrell (St George)A dual centre international pilot study to assess safety and efficacy of topical sirolimus 1% for the treatment of plantar lesions in epidermolysis bullosa simplex.
  • Prof Allison Cowin and Dr Zlatko Kopecki (Uni SA): “Inside out” therapy for EB patients.

Upcoming Events

  • Day On The Lawn - Lawn Bowls Charity Day - 6th March, 2016
  • Brighter Days Festival - 12th/13th March 2016
  • Melbourne Market Charity Golf Day - 15th April 2016
  • International EB Awareness Week 2016 - 25th to 31st October 2016
  • Cotton Ball SA - 5th November 2016

A Day On The Lawn - Lawn Bowls Charity Event

On Sunday 6th March DEBRA Australia supporter Monique is holding the Day On The Lawn, a lawn bowls day to help raise funds for DEBRA Australia. The event will be held at the MCC Kew Sports Club in Kew, Victoria, starting at 12pm. The day will be filled with plenty of games of Lawn Bowls, a BBQ, Bar, Raffle and heaps of entertainment including a live band! 

Cost of the event is a $20 donation per person, kids under 12 free.

For more information about the event you can contact Monique at monza0601@gmail.com.

Melbourne Market Golf Day MONSTER Raffle

Grab a ticket for your chance to win a brand new BMW 118i Urban Line valued at $47,863!!!

Members of the Melbourne Market Lions Club have been out on the market floor selling raffle tickets and will be back again on the 10 March.   Tickets are also available for sale at the Fresh State office or the MMA Customer Service office.

All proceeds from the raffle will be donated to DEBRA Australia, FareShare and Peter MacCallum Cancer Centre.

Prizes:
  1. BMW 118i Urban Line valued at $47,863 provided by Bundoora BMW
  2. Dinner for ten in your own home by four renowned chefs headed and donated by Jeffrey Tan valued at $5,000
  3. Mystery Holiday to the value of $3,000
  4. AFL Game of choice in MCG Montague Cool Storage Private Corporate Box for 6 people valued at $2,500
  5. Dinner for eight at Society Restaurant in Bourke Street, Melbourne valued at $1,500
  6. Helicopter flight for one hour donated by Mark Walkley valued at $1,000
  7. Helicopter flight for one hour donated by Rick Brockwell valued at $1,000
  8. Male or female watch donated by Timeless Watches valued at $1,000
  9. Male or female watch donated by Timeless Watches valued at $1,000
  10. William Hill betting voucher valued at $1,000
  11. William Hill betting vouches valued at $1,000

The seller of the most tickets and the seller of the winning ticket, will both receive $1,000 travel vouchers from Continental Pacific Travel Services with the raffle drawn at the Melbourne Market Golf Day Dinner on Friday 15 April 2016.

For more details contact Sally Piper at Fresh State on 03 9408 6627 or sallyp@freshstate.com.au.

The printing of DEBRA News is kindly donated by Nu Skin.

 
 
 

 
 
Copyright © 2016 DEBRA Australia, All rights reserved.



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