The latest news from DEBRA Australia.

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October 2016

International EB Awareness Week is held every year from October 25th - 31st and used to rally the EB community, friends and family together to help raise awareness and funds for EB around the world.

As in the past years DEBRA Australia holds our Dine and Donate Campaign. Restaurants, families and friends are all hosting Dine and Donate events across the country in October and November to raise vital funds and awareness for DEBRA and EB in Australia.

It's not too late to organise an event! For more information and to participate yourself, check out www.dineanddonate.com.au.

DEBRA Australia needs your help!

DEBRA Australia is currently in the running for Helping Hands Group's 'Last Donor Standing' Competition, where a charity organisation will be given a Phuket Holiday worth $17,500 from Helping Hands Group to auction off at a future event. This is an excellent cause as it helps raise awareness for DEBRA Australia and will provide vital funding to DEBRA when the holiday is auctioned off at a future fundraising event. Here is how you can help.

Follow this link to the Helping Hand Group Facebook Page
In the comments tag DEBRA Australia by typing @DEBRA Australia (if on mobile you can use #DEBRA Australia)
Share out the competition post to your friends and family and tell them to tag DEBRA Australia as well
Cross your fingers because you are in with a chance to win your OWN $17,500 holiday just for voting

And thats all you need to do! We would love all the support you can give.

The DEBRA Aus/NZ group blow carting on the beach, EB style.

On August 19, DEBRA NZ hosted an action packed Family Camp in Christchurch. Seven young EB adults along with their carers were supported by DEBRA Australia to attend the four day camp. Everyone had a wonderful time and enjoyed the opportunity to meet up with the 25 New Zealand EB families who also participated. The networking was invaluable to interact and exchange ideas about living with EB.

The families toured around Christchurch, a city which is still recovering from the earthquake and in a re-building phase. A trip to Mt Hutt for an adapted skiing program was a fun experience for most, there were many first time skiiers who got to achieve a goal that they never thought possible. Blow carting was also another fun activity that was conquered.

Aussie families arrived home tired but they had a wonderful time and will cherish the fond memories forever! A big thank you to DEBRA NZ and all the volunteers involved who made it all happen.

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 ebfamilysupport@debra.org.au

Wayne and Eliza from VIC on the snow fields in Mt Hutt

Stevie from NSW showing off some ski fashion

Meeting up with new and old friends (from left) Ben, Lisa, Bianca, Sean, Bree, Dean & Stevie

Connor and Fiona blow carting

Follow Your Dreams Grant 2016 - Connor's Car

Connor was the successful recipient for the 2016 Follow Your Dream, granting him financial support to buy his first car. In his own words “having my own car has made such a difference to my life and best of all my confidence and self-esteem. I have many medical issues but as I’m nearly 18 years old it was something I have been yearning for just like other kids my age. My sincere thanks to the Kate Turner Fund and Follow Your Dreams grant for financially supporting me to purchase my very own car. Kate and Carmel will be proud of me I think.”

Connor in his new first car

Run for EB - City2Sea Melbourne Marathon

Just under 4 weeks to go until the Sunday-Age City2Sea in Melbourne on Sunday the 20th November. Our #teamDEBRA runners are well on their way to helping us reach our target of $7,500 for our EB families. Together we can make a BIG difference. There is still time for you to sign up to Team DEBRA and participate in the City2Sea. To register, follow this link.

Victor Harbor Fun Run Adelaide

#teamDEBRA will also be participarting in the Victor Harbor Fun Run coming in February. More information will be posted on our Facebook page closer to date. If you would like to join #teamDEBRA for the event then get in contact with us at fundraising@debra.org.au.

2016 Annual General Meeting

Thank you to members who attended the 2016 AGM on the 12^th September via teleconference. We would like to welcome Belinda James and David Hanvey as new board members and farewell Shay Zulpo and Michael Fitzpatrick and thank them for their years of dedication and support to the organisation. More information on David and Belinda will be included in the next newsletter.

FGX donating 2.29 million for charities around Australia

A huge thank you to the Future Generations Fund (FGX) for their wonderful support. DEBRA has received an amazing $126,422 from FGX to further support the EB Nurse Program to fund the Paediatric EB Nurses, In Home EB Nurses (excluding SA where these nurses are funded by the Little Heroes Foundation) and establish a new part time transition EB Nurse in Melbourne. This contribution will expand the existing program in place and ensure families will continue to have access to essential services with additional specialised care in place. For more information check out the FGX Website.

Other Supporters

Thank you for your amazing generosity:

Canterbury Girls School - $1,700
Heathcote Public School in memory of Josh - $730
Ravenswood Hotel WA - $2,280
Toowoomba West Anglican Parish Teapot Extravaganza - $1,500
St George Leagues Club - $1,530
Toombul Bowls Club in Brisbane - $1,520

EB Clinical Trial Sites in Australia

Adults and children with simplex, recessive dystrophic, or non-Herlitz junctional types of Epidermolysis Bullosa are being recruited for a Phase Three Clinical trial of a topical therapy product, SD-101 from Scioderm Inc. There are now three Australian sites participating in this international trial (one in Sydney and two in Melbourne), along with many other centres in the USA and Europe.
Please see the notices below for more information and people to contact if you may be interested.

Details may also be found on the International Clinical Trials website.

Additional flyers:

Healthy Blossom a Winner!

Thank you to everyone who voted for the photo of “Healthy Blossom” (section of human colon tissue). Dr Zlatko Kopecki (EB Researcher) and his team are very grateful for your support, as a result they won the People’s Choice Award! More information available at http://www.unisa.edu.au/research/photocomp/

"Healthy Blossom"

Date Claimers

2016

25^th – 31^st October: International EB Awareness Week
October & November: Dine & Donate for DEBRA
5^th November: The Cotton Ball Adelaide SA - Last chance for tickets - don't miss this amazing event.
17^th November: EB Health Professionals Symposium (Melbourne)
20^th November: Run For EB - Melbourne City2Sea

2017

2017: Million Dollar Run - Check out Andrew's Website, Facebook or Donate
7^th January: Tough Tilly Day
February: Victor Harbour Fun run
24^th March: Melbourne Market Charity Golf Day
September: Sydney Gala Event