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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.

October 2015

Dine and Donate for EB Awareness Week 2015

Every year EB Awareness Week starts off with EB Day on the 25th of October and is a time where over 125+ DEBRA National Organisations and all the supporters from around the world come together to help raise awareness for EB in their local communities.

What can you do to help raise awareness of EB? Lots of things! Why not write a letter to your local members of Government and local newspapers to help raise awareness or even take part in DEBRA Australia's Dine & Donate campaign.

As part of EB Awareness Week 2015, we will be running our Dine & Donate Campaign to help raise awareness and funds. Whether it is a BBQ, a high tea, breakfast or dinner party, EB Awareness Week is the ideal opportunity to get your family and friends together to help raise much needed funds for DEBRA Australia. All you need to do is host an event, ask your guests for a donation and enjoy bringing everyone together for a fantastic cause.

We can help with some fundraising ideas and we have plenty of merchandise for sale so let us know if we can send out a few things to help boost donations. So, what are you waiting for? Register your event on the DEBRA Australia website and we will send out a free Dine and Donate starter kit.

The kit includes promotional material and a tea towel designed by the children in Australia with EB and much more. Make sure you get in quick, as the starter packs are limited. To register your event check out www.debra.org.au/dineanddonate

Thank you all for your support.

Fifth National Family & Children’s EB Camp & Conference and the EB Health Professionals Day

The EB Family Camp and the EB Health Professionals Day held between the 11th - 13th of September were huge successes. We will be releasing a special edition of DEBRA News focusing on them next week. Stay tuned!

Art Union Winner

Winner of the DEBRA Australia Art Union drawn on the 12th September was Silke Raetze & Justin Braitling from the Eliza Braitling Foundation.  Silke and Justin very generously donated the prize back for a re-draw! Nigel Holley from Sunshine Coast Qld was then the second winner who has recently purchased a new motorbike. Nearly $13,000 was raised from the raffle which will support the EB Nurse Program.  A big thank you to all involved who sold and purchased tickets.

Family Support Program

The Family Support committee have been busy supporting many families from different states with various types of requests. We have recently granted quality of life, nursing support & independent living requests just to name a few.

Sadly, one of our young baby’s passed away in September after a 12 week battle with severe EB. Our thoughts & condolences go out to the Findlay family during this very difficult time.

Cochrams Building Constructions have offered their time and labour to two DEBRA families from ACT & NSW. Employees from this company will join forces to do minor home renovations & a backyard make over. DEBRA appreciates Cochrams generosity in making a difference to these families.

It was lovely to see so many new (& old) families at the recent EB family camp in Caloundra QLD. It was a great opportunity for new families to meet and share their personal stories with each other & we have received amazing feedback regarding the event.

If you have any enquiries about the Family support program, carer respite and the sibling program please contact our Family Support Coordinator – Simone 0413 967 609 or via email ebfamilysupport@debra.org.au
Bianca with her new laptop purchased via the Family Support Program to assist with Uni studies and promoting independence. 

Kate Turner Fund

Kate and Linda Turner
Do you require minor funding assistance for your EB problem? 

The KATE TURNER FUND was established in 2013 by the then South Australian entity of DEBRA Australia, honouring the wonderful stamina and determination of South Australia's own sufferer, the late Kate Turner, to spread the word about EB to the world, as she did so admirably. 

The FUND now has the ability to help other EB sufferers with grants available on application at any time via the www.debra.org.au/kateturnerfund or emailing kateturnerfund@debra.org.au.  No formal application form is required, requests for funding will be approved by a select KTF Committee on the basis of providing assistance to the person living with EB in any practical way, whether to make their life easier or just boost their morale in some way. 

Any application must be accompanied by a satisfactory costing and may be for a total or top-up grant.

The total of all or any grants in any one year will not exceed $5,000.

Donations

  • A team of dedicated runners called the SA Dermatology Team ran in the Sunday Mail City Bay Fun Run in Adelaide and raised $1,686 for the Kate Turner Fund in September.
  • The Fashion and Psychic Charity Fundraiser held in Prospect, South Australia raised over $10,000.

TP Insurance Golf Day Another Great Success!

Another successful fundraising event was held by David Michell and his team of staff and supporters. The event was rained out on the day at the lovely Macquarie Links Golf Course NSW, but they still managed to have fun and raise over $35,000 to support families living with EB in Australia. A huge thank you to all involved.

AFL Footy Show

Eliza got an amazing chance to attend the Footy Show in Melbourne along with two of DEBRA’s Ambassadors, John Platten and Brock McLean.  This wonderful opportunity came about after the tickets were donated by Alison Visser from Melbourne, who purchased them from the Cotton Ball event earlier this year. Alison and friends also created more awareness through their local sports clubs which has resulted in more donations coming in totalling over $4K.
John, Eliza and Brock at the AFL Footy Show in Melbourne.

Murwillumbah High School Students Raise Funds for DEBRA

Dean and Sue attended the Murwillumbah High School Year 12 Graduation Assembly on the 17th September to celebrate the achievements of this year’s graduating students.  Students from Grade 12 had worked tirelessly all year with a Lamington Drive to raise $2,200 for DEBRA as their chosen charity.  Sue and Dean were very impressed by the students and teachers who dedicated their time and resources to help make a different. Best wishes to all the Year 12 students for their HSC exams this term.
Dean Clifford (Motivational Speaker and DEBRA Spokesperson), Sue McKenna (DEBRA Administrator/Secretary) and Victoria (Grade 12 Student) during the cheque presentation.

AWCI Gala Ball

Simone attended the Association of Wall and Ceiling Industries Victoria (AWCIV) Gala Ball in Melbourne on the 21st August as guest speaker.  This lovely group of people raised $4,265 for DEBRA which is a great result. Thank you to all involved. 
Ian Swann (Executive Director, AWCI ANZ), Simone Baird (DEBRA, EB Family Support), Tanya Chudasko (Executive Officer, AWCIV), Paul Gardiner (President, AWCIV), Christine Walker (AWCIV) & Heather Michaluk (AWCIV)

Butterfly Cards

Some more beautiful Butterfly Cards donated to us by the 'Butterfly Cards for DEBRA' group. The group was founded by Ellen Budden who originally started donating cards and has now set up a Facebook Group where more people can join up and make butterfly themed cards to send as a thank you to various people and organisations who donate to DEBRA Australia. If you would like to join up to Ellens group click the following link: www.facebook.com/groups/457581524423481

DEBRA Australia Research Grant

DEBRA Australia is pleased to call for applications for new research funding for projects aimed at improving the health and wellbeing of children and adults with Epidermolysis Bullosa (EB), in any of DEBRA’s priority research areas. The deadline for application submission is 2 November 2015. Funds of up to AUD $30,000 over 1 year are available for the grant. Depending on the applications received, the full amount may be awarded as a single grant to one applicant or split into two awards. It is planned that decisions on funding applications from this call will be made in December 2015.

Projects may be laboratory based, a clinical study, or a combination. Projects should start in January 2016 and be finished by December 2016 with respective progress and final reports to DEBRA Australia expected in July 2016 and December 2016. Grants will be paid in two equal instalments in January 2016 and July 2016 (following assessment of progress report), on receipt of an invoice from the institution.

For more information and for the full terms and conditions follow the link through to our site: http://www.debra.org.au/research/eb-research-grant/

Rotary Research Grant

Australian Rotary Health has opened up applications to provide stipend and incidental support for a
postgraduate student who is undertaking full time research in Epidermolysis Bullosa. The annual value of the “Australian Rotary Health/Kerry Anderson District 9650 Funding Partner Scholarship” is $29,000. The award will be made for one year in the first instance but can be extended for a maximum of three and a half years (total) upon receipt of satisfactory annual progress reports. Applications close the 11th of December 2015. For more information download this following PDF file. 

Kerry Anderson / Rotary District 9650 PHD Scholarship Investigating Epidermolysis Bullosa

DEBRA Membership

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

Upcoming Events

  • African Violet & Gesneriad 2015 Annual Show 17th & 18th October (Brisbane Botanical Gardens, Mt Coot-tha Road, Toowong QLD)
  • Rock ‘N’ Roll Spectacular Sunday 18th October (Stars Night Club, Loganholme QLD)
  • International EB Awareness Week 25th – 31st October.
  • Runway Fashions event at Wellcamp Airport QLD 17th November
The printing of DEBRA News is kindly donated by Nu Skin.

 
 
 
 
Copyright © 2015 DEBRA Australia, All rights reserved.



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