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The latest news from DEBRA Australia

DEBRA News October 2019

DEBRA AUSTRALIA supports individuals living with EB ‘the worst disease you’ve never heard of’ for more information about EB and our life changing programs click here.

Family Support

Recently 10 mums of severe EB children attended DEBRA’s annual respite weekend away. The weather was beautiful and the ladies thoroughly enjoyed each other’s company. There was a mixture of activities including home catered meals, restaurant dining, yoga, relaxation massages, sunrise horse riding, shopping, wandering through markets, walking along the beach, sleep ins and general relaxation. There were lots of laughs (and a few tears) and the mums all agreed it was the best respite to date. They all left Byron Bay feeling refreshed, stronger and ready to face the next part of their journey with EB. DEBRA and our mums are most grateful to our very generous sponsors who make this escape possible –  thank you Byron Luxury Beach Houses! For some of our mums this trip away is the only opportunity to have some quality free time and they look forward to it all year.

The mums were surveyed after the weekend and had this to say:

“I had a wonderful break away from caring for my son. I don’t really get much time out so this was really special for me. I felt very pampered. Thank you.”

“it was great to be with an amazing group of women that have been through EB or going through it. I don't think I have laughed so much. Just to be able to go for a walk or have a cuppa with someone. To be really honest I did not have to worry about bath and dressings for 5 days. I had the whole day for me. Thank you very much DEBRA for giving me the break. I am really grateful. Thanks is not enough but THANKS.”

“It's a great opportunity to spend time with other EB mums who have an understanding of what it's like living with the condition. There's no pressure or expectation from anyone because we all share the same journey. The trip was a great opportunity to get away from it all and switch off.”

The Family Support Program has been busy supporting many families with various needs over the past few months. Little Alisha has recently had a rough trot in ICU but is home with her family now after a long admission in hospital. We also recently caught up with many families during an EB clinic in Adelaide. If you have any queries and need help with family support matters please contact Simone Baird on 0413 967 609 or simone.baird@debra.org.au

Simone (Family Support Coordinator) visiting families in Adelaide

2019 mums much needed respite Weekend in Byron Bay

NDIS Update

Effective from 1 October 2019, the Commonwealth and State Governments have recently agreed with effective from 1 October 2019 for the NDIS to fund more than 90 disability-related health supports relating to:

  • Dysphagia
  • Respiratory Conditions
  • Nutrition
  • Diabetes
  • Continence
  • Wound & Pressure Care
  • Podiatry & Foot Care
  • Epilepsy

Further information can be accessed by https://www.ndis.gov.au/understanding/supports-funded-ndis/disability-related-health-supports/disability-related-health-supports-participants. If you have any questions please don’t hesitate to contact our Family Support Coordinator on 0413 967 609

PB4EB

Each year DEBRA supporters challenge themselves with PB4EB in May. Our participants set a goal or personal best to carry out during that month and help DEBRA raise more awareness and raise funds through their challenge. In this year’s PB4EB Lara Scott, mother to Lylah set a goal of a 300kg leg press and blitzed her PB. It’s time now to start thinking about what your challenge might be for next year’s PB4EB.

Ambassadors

Matt Bevilacqua

DEBRA Ambassador Matt Bevilacqua has been very busy recently with his fifth consecutive win at the 2019 Molokai to Oahu Paddleboard World Championship and setting a new record. He also recently took out first place in the 2019 Coolangatta Gold Endurance Race. Congratulations on both wins Matt!

Matt taking first at the 2019 Coolangatta Gold

Announcement Dean Clifford

We are delighted to welcome Dean Clifford as an official ambassador of DEBRA Australia. Dean has been an inspiration to many and is a great advocate for the EB Community. Last year Dean was invited into the Hall of Fame for his work in the disability sector and we are privileged to have him as part of our ambassador team.

DEBRA Ambassadors Matt Bevilacqua and Dean Clifford with Bianca Ciccia (DEBRA Fundraising & Marketing Manager)

EB Services

Welcome to Annaleen who is the new EB Adult Nurse based at St George Private Hospital in Sydney.

Days of Works: Thursday and Friday
Office Number: (02) 9113 2523
Mobile: 0499 687 736
Email: Annaleen.OHara@health.nsw.gov.au

Annaleen will be working closely with the other EB Nurses in Australia. For more information on where the nurses are located and contact details, click here.

Directors

On behalf of DEBRA and all the families we would like to thank Rodney Sheaves from Sydney for his tireless work and dedication as a voluntary DEBRA board director over the last 4 years. We would also like to welcome Judith Davis from Adelaide who will be replacing Rodney as a mentor on the board of directors. Judith has been involved with DEBRA events and families over the years and has been a great DEBRA supporter.

Whats On

Walk For Wings has kicked off on the 20th of October in Melbourne and will continue on the 27th of October in Adelaide, Brisbane and Sydney. Bring your friends and family together to raise much needed awarness and funds for DEBRA.

Find Out More

STAND UP #FIGHTEB and be a voice for the
worst disease you’ve never heard of’ Epidermolysis Bullosa.

EB Awareness Week - October 25th - 31st 2019

DEBRA Australia is calling for Australians to stand up during International EB Awareness Week which is the last week in October, and fight for the half a million sufferers of a disease that could leave a person with agonising blisters from something as harmless as a warm embrace.

Find Out More

DEBRA Supporters

Melbourne Market Golf Day (MMGD) Cheque Presentation

A big thank you to the Melbourne Market Golf Day committee and everyone involved for all their hard work in organising such a great event. This year’s event resulted in an amazing $110K donation for DEBRA. This donation will support families living with EB all over Australia.

Left to right: Jason Cooper (Fresh State), Pat Galle and Dom DiMattina (Melbourne Market Lions Club), Simone (DEBRA Family Support Coordinator), David Whitchelo (Melbourne Market Authority) and Mick Sgro (Melbourne Market Lions Club).

Norwex Donation

Early September Bianca, our Fundraising & Marketing Manager attended the Norwex NSW Sales meeting in Sydney, where DEBRA was introduced to the 60 - 70 representatives in the room. DEBRA was selected, out of all presented charities, for the work we do and awarded $6,000 which was announced at the Norwex conference in the Gold Coast two weeks ago. Thank you to the Norwex team for your lovely donation.

Rosa Lopez (EB family member and Grandmother to baby Alexis), Bianca (DEBRA Fundraising & Marketing Manager) and Phillip (Norwex Vice President of Sales

Mt Hotham Fundraiser

On the 17th August we gathered at The General, Mt Hotham to participate in a fabulous event aimed at raising money to go towards the amazing work of DEBRA Australia. A generous crowd all chipped in and $4,057 was raised! At the start of the afternoon, hopes were high as donations started coming in as soon as preparation started around the venue.

Thanks to the very talented work of DJ Eddy, people got more excited and interested in what was happening. As the shaving began people started getting more involved and the voting for the silent auctions increased. At the end of the night as the raffle was drawn, we received numerous compliments from people who attended and were incredulous at the fact they had never heard of EB before.

Blue Illusion Fashion Parade

Shirlee Lindner and her local helpers all had a fun day out at Blue Illusion to raise $445 and awareness for DEBRA. Thank you Shirlee for your continued support to DEBRA.

Blue Illusion fashion parade event which raised $445 for DEBRA.

Adelaide EB Fundraiser

Laraine recently attended a fundraising event in September in Adelaide to help benefit EB families. There were over 60 people in attendance on a rainy night. Everyone had lots of fun and raised $1,210 for the Kate Turner Fund. The guests were very touched, having watched a video about EB a few days prior to attending.

Joan & Roslyn, having heard about the EB children through fundraising by Marie at the Elms Lawn Bowling Group (who support the Kate Turner Fund), wanted to do something also. They organised a function at their Lifestyle Village, The Elms, inviting residents to arrive in “Night Attire”. In addition to some incredibly generous donations, numerous fantastic prizes had been donated to Laraine from friends and were raffled or used for the silent auction. There was a prize for the best dressed and there were some very interesting outfits. There was also prizes for various fun games which helped raise the proceeds.

Thanks so much to everyone for this incredible effort, we really appreciate it.

Laraine, Joan, Roslyn and Marie (Munro) holding the container FULL of money from the nights entertainment plus some previous donations.

42km Marathon in Petra - Jordan

Recently Dermatology Doctor Zhim from the Royal Melbourne Hospital took on the amazing challenge of running a marathon in the Petra desert Jordan in support of DEBRA. Zhim finished the epic 42km challenge in 5 and half hours in tough conditions and raised $1,048.09 for all the EB families. Thank you Zhim for this amazing effort! 

A few words from Zhim:

“Running the Petra Desert Marathon was challenging but definitely an experience! I feel really fortunate to be a part of this and fundraised for DEBRA, a cause that I truly believe in.”

Doctor Zhim crossing the finish line at the Petra Desert Marathon

Major Donors

  • Fredrick Gordon Pty Ltd $1,000
  • Niamh Frances Mannion $500
  • Angagatha Pty Ltd $1,022
  • Brisbane District Grand Committee $790
  • IVE Group VIC Pty Ltd $1,1176
  • Todd family $5000,00

EB Research and Education

Research Grant Applications Closing 28 October

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. Two grants of up to AUD $40,000 each over 1 year are being offered. The deadline for application submission is 28 October 2019. Please go to https://www.debra.org.au/research/eb-research-grant/ for the guidelines application form.

DEBRA International Research Impact Report

DEBRA Australia is one of the 9 DEBRA countries who fund essential research in EB. Between 2012 and 2018 we have awarded total research grants of $378,480. This is a significant achievement for our small national organisation. It is great to see that there is a strong global effort in EB research aimed at finding treatments to improve the lives of EB patients and hopefully one day a cure for EB.

The research field has progressed a lot in the last decade and the number of clinical trials is increasing. DEBRA Australia has key personnel attending the 2020 EB Global Congress in London to learn more about the EB research updates and to see how we can become more involved and bring more benefit to our EB families..

DEBRA International have recently put together an impact report which is well worth the read.

DEBRA International Research Impact Report UK

DEBRA International

EB Clinical Practice Guidelines

DEBRA International continues to publish new clinical practice guidelines (CPG’s) for improved care and treatment of EB patients. The latest guideline published is for Podiatry. Family members and health professionals from Australia contributed to the guidelines which included Lisa Brains, Michael Fitzpatrick, Adam Harris and Dr Laura Iacobaccio. Prof Dedee Murrell and Dr Susan Robertson were involved in the review. Another new CPG is the Psychosocial CPG. More new CPG’s will be shared in the next newsletter.

Podiatry Clinical Practice Guidelines 2019

Psychosocial Clinical Practice Guideline 2019

Upcoming Events

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