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The latest news from DEBRA Australia.

May 2016

Mothers always want to make things better. But sometimes a band-aid and cuddle just won’t do.


Don't know what to give for Mother's Day or don't know what you would like? 
You can give a gift of hope to Mums like Simone, so we can help them be Mums and not full time carers. 
You can read Simone and Eliza's story here or you can make a donation now!

EB Family Support


Our Family Support Coordinator has been busy visiting EB Clinics around Australia meeting up with families.  It is a great opportunity for Simone to chat with families face to face to be able to discuss support requirements.

Recent allocated grants include providing Zoe with a much needed wheelchair to enable her to get around easier.  A new cubby house has also been funded due to Charlotte’s much loved cubbyhouse (built by her grandfather) being dislodged and destroyed in a Sydney storm.  The cubby house enables Charlotte to have many hours of fun with her friends while Mum is busy with her daily dressings inside the house. Charlotte has called it her home away from home! Myka also in NSW is enjoying her new play gym which is soft and keeps her safe while developing the skills to walk. 
 
Charlotte with her new cubbyhouse.
Myka with her new play gym.
Dean with his new laptop.
Zoe and carer with her new wheelchair.
A big thanks to the Eliza Braitling Foundation for funding a new Apple Mac laptop for Dean, which has provided him with the opportunity to upgrade prepare presentations for his regular public speaking events.

The Follow Your Dreams grant is closing at the end of May, anyone wanting to submit an application please go to link for the online application process. 

If you have any enquiries about the Family Support program, carer respite and sibling support, please contact our Family Support Co-ordinator – Simone on 0413 967 609 or via email: ebfamilysupport@debra.org.au

EB Nurse Program


EB Clinic at the Royal Children’s Hospital, Melbourne

The EB clinic at the Royal Children’s Hospital in Melbourne is an action packed morning consisting of roughly 12 families who all make their way into the hospital from various parts of Victoria. We have 5 multidisciplinary EB clinics over the year with minor clinics in between. 

The multidisciplinary team approach allows the families to see a range of health professionals who have a special interest in EB. The team on the day include dermatologists, registrars, EB nurse, nurse practitioners, dentistry, podiatry, social work, dietician and psychology. We also have Simone from DEBRA visit to meet any new families and to support and provide advice for anyone who needs it. All of these specialties can have a major impact on the child and family, as we know living with EB throws up many challenges with everyday life that others can take for granted.

Some children are seen at each of the EB clinics and some are seen on a yearly basis, depending on the needs of the child and family. Some children are seen via a teleconference when dressing changes or travelling a long distance make attending clinics difficult. 

The clinic is a great way for children and their families living with EB to trial new products, to help resolve ongoing or new issues that arise and to meet up with others and to chat about their experiences.

The best part about the day for me is to see the familiar, smiling, resilient faces each and every time EB clinic is on.

Article by Lauren Weston (EB Nurse Melbourne RCH)
 
Eliza doing a telemedicine conference with the EB Nurse Lauren Weston and Dr Susan Robertson - dermatologist 

New Part Time DEBRA Staff Member - Meet Bianca

DEBRA Australia is pleased to welcome our latest Part Time Staff Member Bianca, who is taking on the role of DEBRA Australia's Fundraising and Marketing Manager.

Bianca has been working in the Not For Profit sector for nearly 9 years with a focus in the Children’s charity sector and a passion and drive to make a difference to children and families suffering with debilitating and fatal illness.

Previous to working in the Not For Profit sector Bianca had a strong background in property marketing and sales, enjoying the creativity that her role brings and wanted to be inspired in her role to make a difference in the community which is her reason for moving into the Not For Profit sector.

Bianca enjoys spending time with her 2 daughters, husband, family and friends and is known to enjoy planning tropical holidays and heading out for great food and wine.

She is much looking forward to being a part of the amazing work that DEBRA Australia does and making a valued contribution in how we can keep supporting these special Butterfly children and their families.

We wish Bianca the best in her new role and the DEBRA Australia Board, Staff and EB families are all looking forward to working with her.

Join our team and run for EB… #teamdebra


The running season is upon us and we need a team of runners to take on their personal best or just head out for a day of fun.

You can – Grab a mate, grab a team, grab your work colleagues or grab yourself and join our team…

Find out more about how to sign up click here.

The Cotton Ball South Australia

5th November, 2016

Adelaide Convention Centre

The Cotton Ball is helping raise funds for DEBRA Australia.

“The 2016 Cotton Ball SA will be a spectacular black-tie event, with great food, wine and entertainment. To be held at the newly renovated Adelaide Convention Centre, on the banks of the river Torrens, the night will include both a silent and a major charity auction. Funds raised from the evening will be dedicated 100% to improving the quality of life for sufferers of this devastating disease.”  â€“ The Cotton Ball Website

For more information and to book your tickets: thecottonball.com.au

Amazing Communities Supporting DEBRA

 

The Brighter Days Festival


The Brighter Days Festival was held again this year in Bright.  Bikes, cars and bands, the perfect mix!  This event just gets bigger and better. As a result DEBRA Australia was a lucky recipient receiving a lovely $105,000 donation to support families living with EB.  Thank you to all involved for your huge effort and dedication.  More and more people go along each year and next year should be no exception!  
Simone receiving DEBRA Australia's cheque from Brighter Days President Steve Dundon.
The wonderful Brighter Days Committee.

Melbourne Market Charity Golf Day


The 2016 Melbourne Market Charity Golf Day was again a great success.  Perfect weather, record crowds and lots of fun had by everyone, on the course and at dinner. DEBRA Ambassador John Platten from Adelaide attended and guests were given the chance to play along the AFL legend.  124 players, 11 Tee Sponsors, 6 Gold Sponsors and 4 AFL players enjoyed the stunning greens and fairways of the Heidelberg Golf Club on a warm Autumn day on Friday 15 April.  Last count was $65,000 being donated to DEBRA! What an amazing team and contribution – thank you to all involved.   Plans are already underway for next year’s event. 
DEBRA Australia Ambassador John Platten, Eliza (Simone’s daughter) and Simone (Family Support Coordinator)
The Melbourne Market Charity Golf Day Committee: Mick Scro, Dom DiMattina, Pat Galle, Mark Walkey, Joe Amalfi, Simone Baird, Rebecca Curcija,  Sally Piper, Chris DiMattina.

Day on the Lawn


Day on the Lawn event was held in Melbourne raising $8,000.  A big thank you to Monique who organised the event along with her friends and family. Also thanks to the band POPCORN for providing some great entertainment during the day, you can check them out at popcornband.com.au.
POPCORN playing during the Day on the Lawn.

Red Dress Run


The “Red Dress Run” was held March in Adelaide this year, it was a sight to be seen as 38 runners dressed up in a red dresses to raise $1536 which has helped to kick start the Million Dollar Run tally. You can find out more about The Million Dollar Run here.
Laraine, Andrew (Million Dollar Runner) and Red Dress runners.

Donations

Some of the EBCC riders decided to go on an informal ride from the Hunter Valley, down to the Brighter Days event and back again.  At the end of the ride there were no broken bones and all bikes in one piece! As such great supporters the riders decided to make a donation to DEBRA and collectively passing the hat around they came up with nearly $10K – what a great achievement and a huge thanks for your ongoing support.  
The EBCC Riders During their trip down to the Brighter Days Festival.
Thank you to the following individuals and groups for their lovely donations:
  • Castle Hill Women’s Bowling Club $400.
  • Canterbury Primary School $1,560.
  • Tree logistics $500.
  • Cal Com Kindy Disco $610.
  • City of Gosnells Council $1,008.
  • Jacob Schepis (JPS Fitness) donated $5,652 via Everyday Hero which was raised from a trivia night held.
  • Comcraft $1,000.
  • Bluestar Print $485.

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