The latest news from DEBRA Australia
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June 2014

What great supporters DEBRA have!

This year so far there have been some amazing fundraising events held to support DEBRA Australia.

Brighter Days have made a lovely $50,000 donation to help support various programs in place. Thank you to Steve Dundon and his wonderful committee of volunteers who make this amazing event happen each year.
Baird and Wilkes family at the cheque presentation with President of the Brighter Days Charity Steve Dundon and other committee members.
The 10 day EB Cross Country Adventure ride for 2014 took in some wonderful sights on tracks from the Darling Downs in QLD to the Hunter Valley in NSW. All up $43,000 was raised, which was all made possible by a great bunch of riders, officials and our lovely sponsors and donors.  We owe a big thank you to Lyndall and John for putting on the end party at Anggatha Winery Estate which raised $12,000 on the night.  Also thank you Rob, Anja and all the officials who worked hard to make it happen. 
EBCC riders stopping to look at one of the many beautiful waterfalls on the ride.
Monument of Captain Thunderbolt in Uralla.
John, Lyndall, Stevie & Nathaniel at the end Jackaroo, Jillaroo party in the Hunter Valley.
The supporters and sponsors who helped made the ride possible.

Nutrition Seminar

A successful Nutrition Seminar was held at Sydney Children’s Hospital on the 1st April which was well attended by health professionals from all over Australia.  The main guest speaker was Lynne Hubbard from the UK who has been working with patients for many years as a Senior Specialist Dietitian in EB. Topics included nutritional challenges in EB, oral care and dental aspects, use of gastrostomy tubes in EB, oesophageal strictures and case studies. The Nutrition Seminar was all made possible from a generous grant funded by the Newman Foundation.

Family Support Program

Simone the new coordinator of the Family Support Program has hit the ground running supporting families from all over Australia.  This new program was all made possible with the funding donated from the Cotton Ball held in 2013 in Melbourne.  Families can now access more support in regards to advocacy, medical supplies, medical equipment and improving their quality of life.  For more information on the Family Support Program or an application form please contact Simone at   
Lisa from VIC with her new house ramp which was funded by the Family Support Program.
Shane from Young Care and Tash from Temp Smart in Brisbane met with Dean & Simone to discuss the In Home EB Nurse Program which is funded by Little Heroes Foundation.

Date Claimers

  • September 5th: AGM (12 midday via planning session & teleconference facilities) 
  • September 19th - 21st: DEBRA International Congress 
  • October 25th – 31st: EB International EB Awareness Week
  • October 25th – 31st: Dine & Donate Event for DEBRA Australia

  • January 3rd: Tough Tilly Day 
  • March 7th: Brighter Days        
  • March 14th: Cotton Ball 
  • September 11th: EB Health Professionals Seminar
  • September 11th - 13th: EB Camp / Conference (Pelican Waters – Caloundra QLD)

Raising Funds for Research

Article by Linda Turner

My daughter Kate was always keen on art at school and in the last three years she has attended an art group with a prominent local artist as mentor and a very special group of people who have one thing in common, painting. Kate lives with a severe type of EB and has found painting a new passion which helps her to escape the pain. 

I have always wanted to do a big fundraising event for research so what better than an art auction. I never imagined that I would have been able to collate such a large number of items, but once I started asking I ended up with just over 100 pieces of art works.

Last year in December with the assistance of Open Door Real Estate we held the auction at their yearly Christmas party. The night was great. Special people, good food, wine, music, photo booth and to top it off, a fantastic display of fireworks towards the end of the night.  
Throughout the night which was attended by 10 guests, we held a silent auction with 30 items and then 15 items were put up with a live auction. In all the night raised $8,437. Kate’s contribution in itself raised $970. The rest of the art pieces that we have left will be auctioned off at our next fundraiser, which is scheduled to happen in August this year.  All funds raised will go towards vital EB Research being conducted in Adelaide. 
Linda Turner

Below: Kate’s passion for painting has helped raise much needed funds for EB Research
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.

Life members

Under the new setup of DEBRA Australia the life members from the State DEBRA organisations and a new life member have been recognized for their years of work and commitment to DEBRA and are now life members of the national body.  DEBRA life members now include: 

- Jennifer Abercrombie
- Bev Connaughton
- Gwen Donaldson
- Laraine Frost
- John Lawless
- Shirley Lawless
- Jan MacAndrew
- Peter Paterson
- Robyn Perham

Work place giving donors

DEBRA would like to thank employees from AUSGRID and Telstra who make a donation to DEBRA on a regular basis. Your donations all add up and help fund the programs in place supporting families.

Also a big thank you to the following donors who make a regular fortnightly / monthly donation to DEBRA:

- Chris Byrne
- Ann Powell
- Fredrick Gordon
- Archie Ajmani
- Glenn Baker

Thank you to the following donors:

- The Wilson Foundation has made a lovely $10,000 donation which will be used to fund the EB Camp in 2015.

- The Bear & Doll Convention was held in Sydney which attracted international guests from all over the world. Kylie and Mary attended the convention to accept a $1,750 cheque which was raised to support EB families. 
Kylie and Mary with the lovely ladies from the Bear & Doll Convention
- $500 was donated to DEBRA in memory of Alex Segulin who passed away from EB.  The lovely donation was raised at a luncheon held by family and friends to commemorate Alex’s birthday.  

Dick Smith Donating to Charities

Charities with the most votes will share in 1 million dollars. DEBRA is registered as a chosen charity on the Dick Smith Charity website. To help DEBRA get more points all you have to do is buy a Dick Smith product, take a photo of it in your pantry and email it in  for one point allocated to DEBRA.  If you take a photo of a Dick Smith product and 10 friends or more, 10 points will be allocated to DEBRA. For more info, click here

DEBRA Australia AGM

When:  Friday 5th September at 12 midday

Where: Sydney (DEBRA Australia Planning Session)

How to join in: contact for teleconference details to phone in for the meeting

New Website Coming

Within the next couple of months DEBRA will have a new website set up to make it more user friendly.  All forms will be able to be completed online which will include applications for the Follow Your Dreams grant, Family Support, EBCC registrations, memberships and subscriptions. 

Marathon in the Alps

Good luck to Jon who will be travelling to the French Alps to compete in the Marathon de Mont Blanc, a gruelling 9 hour marathon. Jon was touched by the story of Tilly seen on The Project and chose DEBRA Australia as his charity to support.

So far Jon has raised over $1500 via his Everyday Hero page, which was his initial goal, but you can still donate as every little bit extra helps support DEBRA. If you would like to support Jon and help with his campaign,  head to his Everyday Hero Page to make a donation today.
The printing of DEBRA News is kindly donated by Nu Skin.

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