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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.

July 2015

EB Health Professionals Day

The EB Health Professionals Day will be held on Friday the 11th of September 2015 at the Novotel Brisbane Airport in Queensland, Australia. The day will focus on sessions regarding Pain Management for patients with EB and the current status of EB Research. This is a great opportunity for Health Professionals focusing in fields relating to EB to come together from all around the world to share their knowledge and network with their peers.

Special guest speakers from the various fields including EB research and treatments will be attending the Health Professionals Day including one of our family members:
  • Dr Simon Cohen (Specialist and Paediatrician – Victoria Pain Specialist Clinic)
  • Dr Tamara Lang (Psychologist – Sydney Children’s Hospital)
  • A/Prof Andrew South (Thomas Jefferson University, USA)
  • Dr Zlatko Kopecki (University of South Australia, Adelaide)
  • Dr Gabriela Pohla-Gubo (EB House Austria and University Clinic of Dermatology Salzburg)
  • Lewis Citroen (Podiatrist, Footworks, Melbourne)
  • Dr Tom Connell (Infectious Diseases Specialist, Royal Children’s Hospital)
  • Dean Clifford (EB Patient)
We suggest getting in contact with your local health professional to see if they may be interested in attending this fantastic event to help learn and network with those already well versed in various fields relating to EB. For more information click here.

Fifth National Family & Children’s EB Camp & Conference

Applications are now open for the National EB Camp being held at the beautiful Pelican Waters Golf Resort and Spa in Caloundra, Queensland from the 11th - 13th of September 2015. The aim of the camp is to bring together families from around Australia who suffer from EB to enjoy a weekend away with events being held for both adults and children.

Adults will have the chance to listen to guest speakers and take part in various workshops over the weekend focusing on different areas of EB care such as Dressings and Pain Management. Fun activities will also be held for the children including a Family Day Out to Underwater World and trips to Laser Zone and Aussie World. For more information and to register for the camp click here.

Kate Moloney - DEBRA Australia's Newest Ambassador

DEBRA Australia would like to announce our latest Ambassador, professional Netball player Kate Moloney. Kate has been playing for the Melbourne Vixens since 2013 and was part of their victory in the 2014 ANZ Championship. Her passion for Netball has gained her many achievements in the sporting world such as the 17/Under Nationals MVP, Captain of 19/Under Victorian team, Vice-captain of 19/Under Australian team and in 2014 competed in the Fast 5 World Series for Australia.

Kate decided to come on as a DEBRA Australia Ambassador after she was fortunate enough to attend the Tough Tilly day in Echuca this year and she was touched by the strength of this beautiful little girl. She would like to create more awareness about Epidermolysis Bullosa - this devastating illness and the around-the-clock care and support these families need. Kate would like to help raise the profile of the disease for ongoing research, better treatments and one day a possible cure.

Fletcher's Story

Hello, my name is Fletcher. I am 8 years old, and a month ago I moved to Tanzania, from Perth. I have EB Simplex, which mostly affects me on my feet, especially when they get hot. 

I really like it here in Tanzania, we live in a big city called Dar es Salaam, the weather is hot and humid all year around, but ‘so far so good’ for my feet. The blisters aren't really much worse than in Perth. I get to swim a lot, which helps to keep my feet nice and cool. 

At my new school, my teachers and classmates know about my EB. People ask me about it, because they haven’t seen it before. The school nurse is also really helpful if I need my special dressings while I’m at school. 

Last weekend we went on a safari, we saw a lot of cool animals, my favourite animals were the hippos because they pop up and down in the water. I’d really like to see a leopard, lion and falcon while I’m here in Tanzania!

EB Family Support Program

If you have any enquiries about the Family Support Program, Carer Respite & Sibling Support please contact our Family Support Coordinator Simone:

Mobile: 0413967609 or Email: ebfamilysupport@debra.org.au

Study to better understand how wounds and scars heal after surgery in people with Epidermolysis Bullosa


We are inviting people with Epidermolysis Bullosa (EB) to take part in a survey to better understand how wounds and scars heal after surgery.

If you are willing, have EB and are 16 years of age, we ask that you kindly fill out a one-page questionnaire about your experience after having surgery. If you are under 16, we ask that your parents help you fill out the questionnaire.

There are no perceived risks or discomforts associated with participating in this survey and it takes about 10 to 15 minutes to complete. We also require that you sign an official consent form to take part in the study. We are happy to supply a stamped, return addressed envelope to make returning the questionnaire to us easy.

We would love to provide you with more information about the survey and encourage you to contact us using the details below.

We look forward to hearing from you!

Yours sincerely,
Professor Dedee Murrell

Contact details:

Dr Adam Harris
Department of Dermatology
Ground Floor James Laws House
St George Hospital
Gray Street, Kogarah, 2217
Sydney, Australia

Ph (02) 9113 2543  Fax (02) 9113 2906
Email: adamgeorgeharris@gmail.com

EB Research

Adam Harris, Michael Fitzpatrick, Dedee Murrell and Zlatko Kopecki attended the Triannual EB Research Conference
The triennial DEBRA International research conference was held in May, at the beautiful Chateau Elan, Atlanta, USA. This three day meeting was attended by over 100 participants and included a range of presentations and posters divided into ten main sessions including: translational EB research; patient perspectives, clinical challenges, basic science advances (including gene therapy and cell and protein replacement strategies), development of new treatments, cancer and scarring, update on clinical trials and therapies currently in development.

Australian EB research and DEBRA Australia were well presented at this prestigious international meeting with both oral and poster presentations and presence of four representatives: Adam Harris, Michael Fitzpatrick, Dedee Murrell and Zlatko Kopecki, pictured above. Attendance at this conference has offered a unique opportunity for Australian researchers to present their data, be at the forefront of knowledge and understanding of latest development in EB research and form international collaborations with experts in the field. EB research is moving at the fast rate and next DERBA International Research Conference will be held in Salzburg, Austria in 2017.

EBCC 2015 Final Tally

THE FINAL TALLY IS IN FOR EB CROSS COUNTRY 2015! $45,408.54 was raised for the national EB Nurse Program which includes $32,108.54 in donations and $13,300 sold via the current raffle. Thanks to the EBCC Crew and all our lovely supporters and sponsors for making it all happen.
All new and squeaky clean at the beginning of the ride.
Stan’s Water Hole on day 12 heading South back to Alice Springs.

DEBRA Australia Art Union

Why not get together with some friends and buy a couple of tickets for a chance in a lifetime to go on a trip to the destination of your choice! $25,000 holiday? Who wouldn’t want to go! Buy your tickets today into the DEBRA Australia Art Union - click here.

DEBRA Membership

If you would like to become a member of DEBRA Australia or subscribe to our newsletter sign up here.

Ambassador Matt Bevilacqua comes first while helping raise funds for DEBRA

A big congratulations to DEBRA Australia Ambassador Matt Bevilacqua for his 1st place at the Molokai2Oahu World Paddleboard Championships in Hawaii! Matt used the opportunity to make an Everyday Hero page to help raise money for DEBRA Australia, for which we are very thankful for. Check it out and make sure you share it out to your friends and family. Congratulations Matt and thank you for all your support!

Donations

Simone at the Sandhurst Golf Club fundraiser with Tanya which raised $2,200

AWCI – Association of Wall & Ceiling Industries Victoria selected DEBRA as their chosen charity for this year which donated $8,655 

Jenny from Quantium in Sydney organised a money tin collection for DEBRA which raised $295.80.


A big thank you to The Protectors Insurance Brokers for raising over $35,000 during their Charity Golf Day held in May.

Upcoming Events

  • EB Health Professionals Conference – 11th September 2015
  • EB Camp – 11th – 13th September 2015
  • AGM Sunday  11.30am 13th September 2015 being held at the EB Camp.
  • Dine & Donate for DEBRA – last week in October 2015
  • Runway Fashions Fundraising Luncheon and Fashion Parade at Wellcamp Airport Toowoomba -  17th November.  Tickets will be made available via the website closer to the date.
The printing of DEBRA News is kindly donated by Nu Skin.

 
 
 
 
Copyright © 2015 DEBRA Australia, All rights reserved.



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