The latest news from DEBRA Australia.

December 2016

From all of us at DEBRA Australia we hope you have a lovely break over the festive season. We would also like to send a heartfelt thank you out for your ongoing support to help families all over Australia living with EB. Thank you for making a difference and we can’t wait to see you again in 2017.

Cotton Ball Adelaide

The Cotton Ball Adelaide was a fun packed night with over 700 guests attending the spectacular event at the Adelaide Convention Centre on the 5th November.  The organising committee had thought of everything from great entertainment including James Blundell and the Red Ties to an array of fantastic auction and raffle prizes to be won. Our very own DEBRA Ambassador John Platten was a major supporter of the event and did a brilliant job, as well as our ambassador Brock McClean attending the evening.

The Adelaide event came together when the Krause family wanted to do something BIG and make a difference for families just like theirs living with EB, they gathered the right committee for the job and set off on delivering the spectacular night. Their daughter Ivy who lives with a severe type of EB also attended the event with her date Eddie Perfect who flew in when he heard that Ivy had chosen him. The night was a huge success and a final figure has been tallied with an amazing $115,000 raised to support families living with EB in Australia.  Thank you from DEBRA and our families to everyone who was involved in this amazing event.

More photos from the event can be found here.
Back Row: Steve Krause, Simon Hoey, Taras Grund
Front Row: Samantha Sykes, Hannah Krause, Michelle Lewis, Jacqui Hays, Vonnie McMullan, Jen Griffin, Caitlyn Hoey, Jude Davis, Kath Philp, Leanne Platten and John Platten 
Singer/Actor Eddie Perfect and Ivy

Save the Date - BravE Butterfly Gala

DEBRA Australia is proud to present the inaugural BravE Butterfly Gala at the exciting Dockside Pavilion in a secret location on Sydney Harbour. We are set to get your senses racing next year as we present a night filled with entertainment, 5 star food and 5 star location. All funds raised from the evening will go to DEBRA Australia’s Family Support Programs so we can provide our much needed services to all our families across Australia. We'll have more information for you soon, in the mean time check out our Facebook Page and make sure you share our Facebook Event Page out to all your friends and family.

EB Health Professionals Symposium 2016

A successful EB Health Professional’s Symposium was held at the Melbourne Skin Cancer Foundation in Melbourne on the 17th of November.  International guest speaker Prof Jemma Mellerio facilitated the evening session educating health professionals on the new EB Skin Cancer guidelines.  Participants came from all over Australia and New Zealand.

If you are a health professional and interested in watching a weblink to the session please email A family session was also held to inform patients and carers of the importance of check ups and what to look for.
DEBRA Australia also funded Prof Mellerio to visit health professionals in Sydney as part of her visit to maximise networking and education opportunities.  It was invaluable having Prof Mellerio visit Australia and take time out of her busy schedule to educate families and EB health professionals.
Prof Dedee Murrell, Nikki Howe and Prof Jemma Mellerio meeting up in Sydney
Dr Wakana Matsumuru from Japan, Prof Jemma Mellerio and Prof Dedee Murrell visiting St George Hospital
Samantha Hill conducting the Accidental Counsellor course to EB Health Professionals and DEBRA staff.
Prof. Jemma Mellerio

Family Support Update December

It’s that time of year again and who can believe Christmas is almost here! The Family Support program has had another eventful year supporting many EB families from all over the country.
These are just some of the families who have received support at one stage or another throughout the year.
Thanks to the many donations and some successful grants which have made supporting EB families possible. The impact of your generosity is enormous and we can’t thank you enough! If you have any enquiries about the Family Support program, carer respite and sibling support please contact our Family Support Co-ordinator – Simone 0413 967 609 or via email

DEBRA International Update

DEBRA Australia International representative Dr Zlatko Kopecki has been busy attending the patient conference in Zagreb in September which was well attended by participants from 34 different countries including 5 Australian representatives.  The next patient conference will be in Wellington, New Zealand 24-26th November and in Switzerland the following year.
Michael Fitzpatrick has stepped down as DEBRA International CEO and the role has now been taken over by Olivia Mullins who is the new business manager.  Olivia is from the UK and will work with the team to improve communications and help drive strategic plan for DEBRA International and liaise with the different DEBRA countries. Thank you to Michael on an international and national level for his contribution over the years and ongoing support.

Mike Jaega from DEBRA UK is the newly elected president of the DEBRA International executive committee along with the other members listed below in the photo.
Olivia Mullins
Left to right: Ritu Jain (Singapore), Brett Kopelan (USA)-Vice Treasurer, Zlatko Kopecki (Aus), Cinzia Pilo (Italy), Avril Kennan (Ireland)-Vice Secretary, Mike Jaega (UK)-President, Loreto Moore (Chile)-Vice President, Mia Werkentoft (Sweden)-Secretary, Judith Kristin Asche (Norway), Shoaib Gopalani (Canada)-Treasurer, Anna Kemble-Welch (NZ).

Run For EB

What a year we have had with thousands’ of kilometres run by our dedicated #teamdebra runners and thousands of dollars raised to support our EB family support programs.
This was our first year creating #teamdebra giving our supporters an easy way to get involved in National key events during the Spring running season. We are delighted to announce that our team raised $27,520 and we can’t wait to ramp up the 2017 season with new events all around the country.

There are so many ways that our DEBRA community can get involved and raise funds for DEBRA Australia including setting up a celebration page, participating in an event or by signing up to be a regular donor all it takes is $5 a week, you can find out how you can be a #teamdebra superhero here.

Melbourne Market Lions Club Golf Day Donation

Family Support Coordinator Simone Baird attended the Melbourne Market Lions Club Golf Day cheque presentation in November to receive the lovely $70,000 donation.  A huge thank you to the Melbourne Lions Club, Melbourne Markets and Fresh State for organising this event to support families living with EB.  A lovely butterfly canvas was presented to the donors on the day. The committee is already hard at work organising next year’s event which they are planning to be bigger and better! For more information on the 2017 being held on the 24th of March. For more information click here and to join our Facebook event click here.

Dine and Donate 2016

Several Dine & Donate events were held across Australia in October to raise funds and awareness for DEBRA with a fabulous $6,000 being raised by all our participants. Thank you to everyone who organised afternoon tea’s, dinners, tradies breakfast and even a hāngi this event is not only a great way to support DEBRA but an excuse to hang out with friends for a cause!
A very big thank you to Anne (on left) at Botanica Garden Cafe in Waverton, Sydney, who supported our Dine and Donate campaign with a DEBRA collection tin on the counter of the cafe, and Cheryl (right) who helped organise our local Dine and Donate campaign.
Grubs up at Aubigney Pub in QLD! Cooks Lenny and Moorby pulling the hāngi out of the ground
Wondakiah Dinner in Sydney
Delicious Butterfly Cupcakes from Mary and Kylie’s afternoon tea party
Great tradies breakfast at Transportable Sheds in Landsborough, QLD

International EB Awareness Week 25th – 31st October

During EB awareness week we shared many stories of just some of our EB community and their journey with EB. It is a time for people to voice what EB is and raise awareness and advocate for those affected. Our EB Nurse at St George Hospital Margaret Norris organised an awareness stand for International EB Awareness Week.
Photo left to right; Dr Charlotte Gollins (University of Birmingham, UK); Dr Minhee Kim (Fellow SGH); Glendi McNab (Secretary); Margaret Norris (EB Nurse); Prof Dedee Murrell (Director of Dermatology); Dr Adriana Castrillon Velasquez (Santiago, Chile); Alice Cheape (University of Aberdeen, Scotland).

Welcome DEBRA Australia's New Board Members

DEBRA Australia is pleased to welcome two new board members to the team: Belinda James and David Hanvey. Belinda comes from a background in the Disability Sector, providing support for children, families and young adults with disabilities. David works in construction and has prior connections to DEBRA, being part of DEBRA Victoria’s board in the mid 1990’s and also has EB himself. We wish them all the best in their new roles. You can read more about Belinda and David here
Belinda James
David Hanvey

Savvy Fitness Survivor

During the week of the 4th – 10th of November the team at Savvy Fitness in Wollongong put on an epic week of challenges for their tribes to participate in. The MAGUIRE & McINERNEY Savvy Survivor Season 20 had their tribes not only participating in events for points but they worked hard to raise an enormous $42,000 for DEBRA Australia and our families. Mel and Jeff North and gorgeous little EB warrior Ky were part of the Blue Tribe and shared their story of EB with the Savvy Survivor participants. Thank you to Savvy Fitness and all that participated in the challenge to help us support more families living in Australia with EB.

Regular Givers

A big thank you to all our regular givers who support our programs and future with their generous donations throughout the year. You can also support DEBRA’s future by setting up a regular occurring donation click here.

Other Supporters

  • Toombul Bowls Club - $1,520
  • FGX Shareholders - Additional $5,795
  • Cos Aloisio - $500
  • Weight Reduction Club of Banyo - $100
  • Mt Barnett Roadhouse Money Tin Collections - $109.15
  • Vipers Softball Club - $203.15
  • Newport Ladies Beef & Burgundy Club Inc - $450
  • Gai Hendi - $1,000
  • Chery & Robert Bathern - $100 donation in memory of Olivia
  • Hassan Halabi - $273.45
Dean accepting the cheque from Audrey at the Toombul Bowls Club

$4,500 Mother’s Day Donation from the Aberfeldie Football Club

DEBRA Ambassador Brock McLean who has retired from professional AFL and has now returned to his local footy club Aberfeldie in Essendon. The club agreed to support Brock’s chosen charity and involved DEBRA Australia with their annual Mother’s day luncheon. Simone (Family Support Coordinator) and her daughter Eliza attended on the day.  They stated it was a fantastic day, beautiful weather and hundreds turned up to support the cause. 

Funds were raised by donations and players contributing a percentage of their wage toward DEBRA. More money was also raised on the day selling DEBRA t-towels which have been designed by kids living with EB.
A big thank you to Brock and the Aberfeldie Club fur supporting families living with EB.
DEBRA Australia Ambassador Brock McLean attending the Mother’s Day Luncheon with Eliza and Mum Simone (DEBRA Family Support Coordinator)

Date Claimers



  • 2017: Million Dollar Run - Check out Andrew's Website, Facebook or Donate
  • 7th January: Tough Tilly Day - Buy Tickets
  • February: Victor Harbor Fun Run - More Information
  • 11th - 13th March: Brighter Days - More Information
  • 24th March: Melbourne Market Charity Golf Day - Register Now
  • April: PB4EB
  • 31st May: Follow Your Dreams Grant Applications Close - Apply Now
  • 9th September: DEBRA Australia Sydney Gala Event - More Information
  • 24th - 26th November: DEBRA International 2017 Conference in New Zealand 


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