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The latest news from DEBRA Australia

DEBRA News June 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.

New General Manager

A big welcome to DEBRA Australia’s newest team member Lise Angus, who is based in Sydney. Lise will be working closely with the other staff and reporting to the board of directors as the new General Manager. Lise has a background in corporate relations and not for profit organisations and will be an asset to the existing staff to help take DEBRA to the next level and create more awareness and contacts.

Lise has been busy meeting DEBRA supporters and health care professionals over the last month. 

Dr Jennifer Marty (DEBRA Chair) and Lise Angus (DEBRA General Manager) visiting the Ingham Institute.

Family Support

The Family Support Program recently granted Rachel, from Victoria a laptop to assist with accessing her studies whilst traveling to medical appointments. Rachel and her family live in the country and travel for 2 hours in peak hour traffic to the Melbourne Royal Children’s Hospital. The laptop is only a small part of Rachel’s care but we hope it makes a big difference to her quality of life and school studies.

The Family Support Program also recently received a letter from Jenny Clifford, mother of Dean, from Brisbane. Jenny wrote: “I would like to express my sincere gratitude and appreciation to Simone Baird, the Family Support Program and other EB mums for the support Dean and I received during our recent drama from a wound that wouldn’t heal on Dean’s shoulder. After many months of infection and trying to heal the wound, I called Simone and some EB mum’s to ask for suggestions. It seemed many severe EB patients were having success with a certain product, which we were then able to access via DEBRA. I’m pleased to say after many months the wound has now healed, the infection is gone and we are now back to our old care regime. I can’t say enough how much Simone and these mums have come through for me, and I am thankful for the support received from them. EB is a small community and we rely heavily on the support of each other. Thanks girls!”

If you have any enquiries about the Family Support Program, carer respite and sibling support please contact our Family Support Coordinator – Simone on 0413 967 609 or via email simone.baird@debra.org.au.

Rachel with her new laptop

Dean from Brisbane, back on track and doing well. He is planning his 40th birthday in Las Vegas

Brighter Days Festival

Another huge crowd of thousands attended the Brighter Days Festival this year in Bright (8 – 11th March). A great time was had by all and the committee once again outdid themselves organising another amazing event. The music was nonstop and even the weather did not deter the fans after some afternoon rain. As a result from this very successful event, DEBRA, who is one of the recipients, received a lovely $150,000 donation. This funding will be utilised to keep the essential programs running within DEBRA to support families all over Australia. A big thankyou to all involved including the Brighter Days committee, volunteers, local businesses and townsfolk for being so accommodating.

Families living with EB attended on the weekend to create more awareness at the DEBRA tent. John from rural South Australia, Lisa and Bianca from Melbourne all attended along with staff and board members.

In Lisa’s words...

Linda, my support worker and I drove to Bright, South Australia, a place I’d never been before. We saw many beautiful cars and lots of bikes along the way all bound for the Brighter Days Festival.

At the DEBRA marquee a biker bloke called Kevin came up and gave Sue some money he had raised by offering rides on his 3 wheeled Harley Davidson bike. Kevin kindly offered to take me on his bike and I jumped at it! Think of a big leather club chair with big recliner arm rests, crossed with a Harley and you get Kevin’s bike. I reckon he’s got to be the first Uber Harley as a few people asked if he could give them a lift instead, with every cent going to the Brighter Days event. These are the kind of wonderful people that we met at the festival, all wanting to support us.

It really is an amazing achievement to have a festival grow so popular so quickly, and knowing it supports DEBRA is gratifying. For its not just the much needed funds raised, but also the awareness of EB has grown so much. People said to me, “do you have EB?” Instead of “may I ask what’s wrong with you?”. Such small changes in a sentence have such a powerful long lasting ripple effect that is created through events such as Brighter Days. Attendees know and hear Eliza’s story, so it makes you feel more at ease, more accepted and welcomed when people already know about EB. Young John from South Australia also did an amazing job on stage and at the DEBRA marquee. On the Monday after the event I was invited to come to the pub where I met a lot of the Brighter Days committee members and volunteers. I was glad to have the chance to pass on our thanks on behalf of everyone in our EB community in person.

Brighter Days committee members Steve, Paul and Rosco presenting John with his new motorised car.

Ken Holden (from Victorian Trike Tours & Joy Rides) with Lisa who went on her very first motorbike ride.

Simone (Family Support Coordinator) being presented with a cheque from Steve Dundon at the cheque presentation event in April.

Melbourne Market Golf Day (MMGD)

Another successful Melbourne Market Golf Day charity event was held on the 15th March at the beautiful Heidelberg Golf Club. Over $110,000 was raised to provide essential funds for DEBRA Australia which was an amazing result. Golf day president Joe Amalfi and committee members from Fresh State, the Melbourne Markets Lions Club, Melbourne Market Authority, Heidelberg Golf Club, Toyota Material Handling, Art & Style and DEBRA were very happy with how the day went. The funds raised will support families living with EB on a national basis.

The weather was a perfect 23 degrees for the 27 teams that registered. Everyone had a fantastic day and thoroughly enjoyed themselves. Thirty lovely volunteers from DEBRA and the Lions club generously donated their time and assisted with manning the holes and registration desk throughout the day.

A delicious dinner was held at the golf course after the event which was attended by 120 guests. Bianca Saunders was on hand as the guest speaker to talk about what it was like to live with EB. A cheque will be presented to DEBRA at an event scheduled in August 2019.

Bianca from Melbourne speaking about living with EB at the Melbourne Market Golf Day

Simone (DEBRA Family Support Coordinator) in front of Team Brescia.

Left to right: Ang, Hudo, Jason, Gerard and Joe Amalfi (MMGD Executive committee)

Some of the volunteers at 2019 MMGD – Bianca (DEBRA Fundraising & Marketing Manager), Melinda (DEBRA Director), Andrea & Nicolle with the major raffle prize car.

MMG Players at the beautiful Heidelberg Golf Club in Lower Plenty, Victoria.

DEBRA Supporters

A big thank you to all our supporters this year, major donors include:

  • Anggatha P/L $1,187
  • WA Billboards $5,000
  • Estate of the Late Peter Smith $2,838
  • Quota International of Wynnum Manly $500
  • FGX shareholders have collectively donated this year $12,786. For more information on FGX and their latest news click here
  • Wenpei Deng $5,000
  • $685 Melinda Oxford and Bianca Saunders Facebook fundraiser appeal
  • Thelma Carr $1,000
  • “Mate’s Ride” $10,000
  • Equity Trust anonymous donation of $21,470
  • Eliza Braitling Foundation $12,420
  • Fredrick Gordon P/L $1,000

Tagen attended on behalf of DEBRA, the McGrath Estate Agents Community cheque presentation where a $500 donation was made to support families living with EB.

EB Research and Education

In May 2019, DEBRA Australia organised a think tank meeting bringing together experts in stem cell research and dermatologists from several states to the Skin and Cancer Foundation in Melbourne. The workshop featured an invited speaker from Stem Cells Australia – an initiative of the Australian Research Council which brings together Australia’s premier life scientists to harness the potential of stem cells for diagnostic, therapeutic and bio-technological purposes. This collaboration also seeks to lead public debate and discussion about the important ethical, legal and societal issues associated with stem cell science and regenerative medicine. A/Prof Megan Munsie from Stem Cells Australia presented a thought-provoking Australian perspective on the progress and newest advances in stem cell technologies.

Ideas for DEBRA Australia to be involved at an early stage in these areas were put forward. Participants discussed various topics from how to educate and inform patients on progress of stem cell therapies, to how we can facilitate and support bringing to Australia clinical trials using stem cell approaches and gene therapy for patients suffering from EB. We also thought about how we could position ourselves as a rare disease patient organisation to support research in this area while seizing opportunities that may present themselves so that peak funding bodies and government do not forget EB as a case study for early development of these exciting technologies. It was suggested that a patient fact sheet relating to the application of these types of therapies in EB should be developed.

A second presentation from Maureen Turner, CEO Biogrid Australia, helped us to focus our thinking on a potential platform for developing a revamped Australian National EB patient registry. This would assist us to work collaboratively across the country to best utilise the collected data in future clinical trials, research projects and for lobbying for better support of Australian EB families. Robust discussion from participants allowed us to identify challenges and work through some solutions to implementing this project.

Other outcomes of the workshop included commitment from participants to form an “EB team” that can work with DEBRA Australia to move forward. We will embark on building our relationship with key stakeholders and strengthening our affiliation with Stem Cells Australia as part of this initiative.

This is just one example of our efforts in fostering and supporting research activity in Australia. We will update you on further progress of the project in the future.

Prepared by Zlatko Kopecki, Lise Angus, Jennifer Marty (on behalf of DEBRA Australia)

Attendees at the Stem Cell Therapy Think Tank meeting in Melbourne (May 2019)

Research Project Update

Previously patients suspected of having Epidermolysis Bullosa had their initial diagnosis made with two skin biopsies, sent for special testing known as immunofluorescence and electron microscopy as required for accessing the National Dressings Scheme. However, in many cases of less severe EB, a biopsy could not always confirm the condition, and would delay access to dressings.

The Sydney Children's Hospital EB team (funded by a DEBRA Australia grant) undertook a study that was recently published as a letter in the British Journal of Dermatology looking at 65 families who had a genetic diagnosis. The study looked at whether an EB expert could clinically diagnose milder types of EB as well as a biopsy test. They found that in many cases, a biopsy is not required for the diagnosis, as the EB expert could make the diagnosis just as well as the biopsy. This is important as children with EB may be able to avoid a test that may lead to distress and upset. A skin biopsy remains important in new-borns when there is no family history.

Dr Orli Wargon and Dr Rebecca Saunderson who were part of the research team

Travel Grant Update from Brendon Lee

A previous successful recipient of a DEBRA travel grant Brendon Lee from the Faculty of Medicine, University of New South Wales in Australia has recently attended the Association for Research in Vision and Ophthalmology Annual Meeting 2019 in Vancouver, Canada. Brendon found the trip very beneficial and would love to share his feedback:

“I had an absolutely fantastic time and received many questions from inquisitive Ophthalmologists from all around the world, who had little to lots of experience in managing EB. I attended the conference to present my poster with Prof Minas Coroneo, the ophthalmologist I worked with. I also want to thank Prof Dedee Murrell for her crucial role in making this research possible. Lastly, but importantly, a big thank you to DEBRA for supporting a young aspiring clinician-scientist and facilitating my goals of attending this conference. After finishing my final medical exams this year, I hope to continue working on and publish the findings of the project. The assistance DEBRA provides is unparalleled and I would love to continue working on EB projects in the future.”

Brendon Lee with Prof Minas Coroneo

2019 DEBRA Travel Grant Awarded

The following travel grants have been awarded to assist the recipients to attend the EB 2020 – Global Congress on Epidermolysis Bullosa being held in London January 2020.

  • $3,000: Lauren Weston (EB Nurse Consultant, The Royal Children’s Hospital Melbourne VIC)
  • $2,000: Moksha Shah (Medical Student & Research Assistant, Ingham Institute for Applied Medical Research, Liverpool NSW)
  • $1,000: Blake Smith (PhD Candidate University of Melbourne, Murdoch Children’s Research Institute, Royal Children’s Hospital Melbourne VIC)

Dr Jennifer Marty (DEBRA Chair), Moksha Shah and A/Prof Albert Mellick meeting up at the Ingham Institute.

The Australian College of Dermatologists 52nd Annual Scientific Meeting

Simone Baird (Family Support Coordinator) had the pleasure of attending the annual conference for The College of Dermatology where she presented on ‘Lessons to be learned from a parent of a child with a chronic skin condition’. Simone also attended a round table discussion with other representatives to discuss the impact of skin. This was a great opportunity to create more awareness of what support DEBRA can provide to EB families and network with health professionals.

DEBRA International Update

It is with great sadness that DEBRA International announced that Mike Jaega, President of DEBRA International and DEBRA UK’s Chair of Trustees, passed away on 6th February this year.

Mike was the first person living with EB to become the President of DEBRA International and a true pioneer for the EB community. He once said, “EB is always there to keep me focused on making decisions that will bring the most benefit to people living with EB worldwide: you never lose sight of why you’re doing the job.”

Mike’s association with DEBRA started at a young age, and he became deeply involved with the charity over the course of his life. His mother, Avril, was one of the founding members of the charity and some of his earliest memories were of playing on the floor of his living room whilst DEBRA meetings took place in his mother’s home.

Mike was a wonderful person with a clear focus, grit and determination to live life to the full, whilst maintaining his trademark dry sense of humour. He was a true inspiration and a real hero in the fight against EB. His passing happened far too early and our thoughts are with his wife and family. He will be sorely missed and never forgotten.

Our sincere condolences to Mike’s family and friends and everyone at DEBRA International.

Mike Jaega – Former DEBRA International President

Global EB Congress 2020

DEBRA International is looking forward to welcoming you to London in January 2020 for the first global congress on EB which will be hosted by DEBRA UK. This ground-breaking meeting will, for the first time, bring together all global knowledge in EB research, clinical management and the EB community. This pooling of state-of-the-art knowledge across the key stakeholders will not only give guidance to the professionals involved in EB, but also help in the development of strategies for the research, regulatory, funding and healthcare communities.

DEBRA Australia is proud to be supporting health care professionals, nurses and researchers to attend this meeting via our Research Travel Grants. Early bird registration is open until end of July, if you would like to register or find out more information about the program please visit the congress website.

Psychosocial Clinical Practice Guidelines

DEBRA International is undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB. CPG’s are guidelines which provide recommendations for clinical care. They are based on evidence gained from medical science and, when no evidence exists, on expert opinion. Our mission is to produce guidelines for all the major clinical areas involved in the care of people with EB. These guidelines will help to improve the clinical and social care of EB patients across the globe. Until there is a cure, there is probably no greater way to positively impact the lives of people with EB. DEBRA International is one of the few patient organizations in the world leading the development of CPG’s. While the guidelines are targeted for health professionals, DEBRA International is also developing guidelines for patients. Latest released guidelines by DEBRA International include Occupational Therapy and Psychosocial Care. To access the complete list of DEBRA International guidelines click here.

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