DEBRA Australia News
March 2014

Tough Tilly Event a Huge Success

Over $40,000 was raised at the Tough Tilly event held at Echuca in January. Ricky Robertson and Rory Brockwell who organised the event have donated the funds to DEBRA Australia to help with family support and research. Over 600 people attended on the day and walked the 5klm to create awareness and raise funds for DEBRA. The event all started when Tilly was born with EB and family and friends wanted to help make a difference for all families in Australia living with EB. Well done Ricky and Rory, we at DEBRA very much appreciate your support.

Rory & Ricky – Tough Tilly Organisers

Corey (Tilly’s father), Simone (DEBRA Family Support Coordinator) & Tilly at the Tough Tilly Event

Tough Tilly supporters crossing the NSW – VIC border.
Leading the walk was ambassador for DEBRA, AFL player Brock McLean.
Young Care Supporting DEBRA
Simone and Dean attended a meeting with Young Care in Brisbane to discuss how they can assist  young people living with EB.  Young Care has generously supported DEBRA with a $10,000 grant to assist with the In Home EB Nurse Program. 

Simone and Dean at Young Care in Brisbane.
EB Nurse Education in UK
Samantha Hay our lovely EB Nurse attended specialised EB training in the UK with a travel scholarship grant that was awarded by DEBRA. Sam also visited the EB Clinics  in London at the adults hospital St Thomas’ and Great Ormand Street Hospital where the children’s EB Clinic is held.  The course was very beneficial and great networking opportunity to discuss EB Care with other health professionals. Sam will now be able to share her knew knowledge with health professionals and families around Australia.

Sam outside the adult’s hospital in London.

Managing Nutrition in EB Seminar

DEBRA Australia is calling for all healthcare professionals interested in EB and/or caring for patients with EB to join us at the Managing Nutrition in Epidermolysis Bullosa seminar held on the 1st of April, 2014 in Sydney. The seminar will cover a wide range of topics and include various guest speakers.

If you would like more information contact For the registration form download it here.

The seminar will also count as 5 hours of Continuing Professional Development time.

Get in quick! Registration closes Friday the 14th of March.

Supported by:

EBCC 2014 Starting Soon

Its that time of the year again! The 2014 EB Cross Country Adventure Ride is starting up March 14th at Adora Downs and finishing up on March 23rd in Hunter Valley. To keep up with the latest updates of the ride follow EBCC on facebook here.
Beaconsfield School DEBRA Donation

Simone & Corey attended assembly at the Beacon Hills Secondary College Melbourne to inform students and teachers about DEBRA and EB. The middle school held a disco on October 13th and the $529 raised was donated to DEBRA Australia. Thank you to the Students, teachers and parents of Beacon Hills Secondary College Melbourne!
Gavin O’Brien Memorial Bowls Day

Another fun day out at the Burpengary Ten Pin Bowling Club. Gavin’s family Maureen and Kenny raised $440 on the day which was donated to DEBRA to help support families. 
Curtis Coast Free Dive Challenge

Organiser Richard Frost has created more awareness for DEBRA and raised $300 from their last event held in October. More information and photos click here
St George Leagues Club

Donated a lovely $1,152 – thank you to staff and management for your ongoing support over the years to DEBRA. 
Research Grant

The call for applications for Round 1 of the DEBRA Australia Research and Education Travel Fellowships has been issued, with a closing date of 14th April 2014.

More information at
Brighter Days Fundraising Event

A great weekend was had by all at the Brighter Days event on the weekend. The event was a  fun charity bike and car rally, starting in Whittlesea, travelling through Mansfield and Myrtleford and finishing in Bright Victoria. With DEBRA being one of the chosen charities that they were supporting. More information will be included in the next newsletter or check out their website here or follow them on facebook here.

Download a flyer click here. (5mb. PDF reader required)
Rare Diseases Day
28th February
Rare Diseases Day events were held in all areas around Australia thanks to Rare Voices Australia and different venues. Sue and Sam attended the session at the Wesley Hospital in Brisbane to listen to some informative guest speakers from Doctors to families living with a rare condition. There are 1.2 million people in Australia with a rare disease, EB being one of them. 
Megan Fookes (Rare Voices Australia Executive Director), Sue (DEBRA Coordinator) and Sam (National EB Nurse) at the Wesley Hospital in Brisbane Rare Diseases Day event. 

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


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