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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.
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COVID-19 Update
Over the last month, we've been keeping a close eye on COVID-19, or Coronavirus, and what it means for our EB community and I’m sure you’re all aware the government guidelines and restrictions are changing rapidly. We have not had any confirmed virus cases within our community, or among any of our staff or volunteers at DEBRA Australia. Our Family Support Coordinator and the program currently remains open to support all families and is available to contact via phone and email. The EB clinics have been cancelled for March and April and this situation will be reassessed towards the end of April for future months.
Telehealth medicine will take the place of the clinics and our Family Support Coordinator will undertake telephone or face time conferencing sessions when needed for the immediate future. These measures are precautionary to ensure we are responsible and are doing all we can to prevent the spread of the virus amongst our community. We will continue to liaise with health and government advisors and review our position accordingly. We will also continue to update you on future events and services as soon as new information develops or our position changes. The Australian government has granted $750 cash handouts to families that qualify for family tax benefits such as disability support pension, carer’s allowance or family payments from March 31, 2020 to mid-April.
For more information go to www.treasury.gov.au/coronavirus.au If you wish to speak to our Family Support Coordinator please call Simone on 0413 967 609 or email at simone.baird@debra.org.au
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Right now, in a world of uncertainty due to Covid-19, we need to come together and PB4EB gives you a platform to challenge yourself, connect with your work colleagues, peers, family and friends. Since most of us our now working and learning from home and living in our new virtual norm we may be missing that team environment.
We are asking you to come up with a challenge and all compete while raising critical funds for our life changing programs
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EB Mum's attend Michael Bublè Concert
A kind donation of Michael Buble concert tickets resulted in a few of our EB Mum’s having some time out at the Brisbane show. A big thank you to M’Lynda Stubbs from Tasmania for donating the tickets to DEBRA and also to Alex and Peter Frampton for purchasing the tickets from a fundraising auction and donating them back. The tickets were put to very good use as you will see from the mother’s comments below.
"We had a fantastic time at the concert last night. He is a great entertainer and has a sense of humour I was unaware of. The weather held out for us so we were able to get to the car dry also. Please thank those who donated the tickets, it was greatly appreciated. It was great to have a night away from the chaos too."
- Creena
Thank you so much for the gift of a ticket to the Michael Bublè concert that was on Wednesday 5th February. Having an EB child means doing baths and dressing changes at night, which can make it extremely hard to be able to attend anything such as concerts. I am truly appreciative and thoroughly enjoyed my night out with other EB mums."
- Shannon
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The Michael Bublè concert in Brisbane
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Kylan checking out his new knee pads for crawling organised via the Family Support Program
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Follow Yours Dreams Grant 2020
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Follow Your Dreams grant applications are closing end of May. To apply click here.
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DEBRA Supporters
Brighter Days Festival
Over the March Labour Day long weekend thousands of keen bike, car and music enthusiasts flocked to country Victoria in Bright to support the annual Brighter Days festival. The three-day event was held at lovely Pioneer Park and participants danced the weekend away to wonderful music from a great line up including Jon Stevens, Daryl Braithwaite, Chocolate Starfish and the Screamin’ Eagles. Members of “Eliza’s ride” from NSW, rode through two days of solid rain to arrive in Bright and handed over a whopping cheque of $8,000 to contribute to the event which was an amazing effort.
The little bit of rain didn’t stop the show and many turned up at the DEBRA marquee to show support to our charity with donations and merchandise purchases. Thanks to the Halfpenny family from Mildura who came along and mingled amongst the crowd and chatted to visitors at the marquee. Little Jessika and her brother Jackob did a marvellous job at selling fairy light headbands, wrist bands and DEBRA bandannas. Thank you also to the Brighter Days committee for their amazing effort with organising another fantastic event. They navigated their way through many hurdles this year and the outcome was nothing short of brilliant.
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DEBRA team ready for the weekend, Simone Baird (Family Support Coordinator), Mary Woods (Director), Sue McKenna (Executive Coordinator), Kylie Gibson (Family Support Committee Member), Lise Angus (General Manager)
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Steve Dundon (Brighter Days Founder) with the Halfpenny family from Mildura.
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(Front) Jessika and Jakob from South Australia helping at the DEBRA tent with Daniel Segulin and his mother Tina (DEBRA Director)
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Kenny from Central VIC Tours & Joy Rides taking Jessika for her first ride on a Harley.
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“Eliza’s Ride” crew with Simone from DEBRA Australia. The group rode from Sydney in memory of Simone’s daughter Eliza who sadly passed away from EB. A massive $8,000 was raised along the way which contributed to the Brighter Days event.
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Melbourne Market Golf Day
On Friday the 13 March the Melbourne Market Golf day went off without a hitch and everyone thoroughly enjoyed themselves. We had 24 teams turn up for tee off at 11am and the weather was perfect for a great day on the course. Congratulations to “Prestige Produce Team” who won the overall golf competition and thank you to the Melbourne Market Golf Day committee and 26 volunteers for all of their hard work in the lead up to and during the day.
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Mark Robinson and Richard Brown from Robinson’s Fresh Solutions with Lisa Brains (DEBRA family member), David Hanvey (DEBRA family member) and Simone Baird (DEBRA Family Support Coordinator)
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Joe Amalfi, Joe Amalfi (Joe’s cousin), Chris Mew, Frank Aloisio, Frank Marchesani.
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Summit to the Sea
Over 3 months on the Murray and 2,400kms navigating his Kayak, 86 years young Kenny Stephens has completed his mission of raising awareness and funds for all those living with Epidermolysis Bullosa. This was a huge adventure for Kenny to take on and he hit all types of weather and treacherous conditions along the way.
Kenny raised $6,370 for DEBRA Australia and we would like to thank him, not only for the fundraising, but for all the awareness he created along the way for EB. You can still support Kenny by donating here.
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Kenny and his trusty kayak after paddling 2,400 kms
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Cockatoo Country Markets
On Saturday 29 February, the Sumpter family held a fundraiser at their local market for DEBRA Australia. The Sumpter’s daughter, Charlotte (aged 3) was born with EB and DEBRA Australia continue to help them on a weekly basis. The family said “we wanted to give back to this wonderful organisation because our life would be very different without their ongoing love and support.”
Mother Jess explained: “Over Christmas I had unplanned surgery which left me on crutches for ten weeks. We were faced with Shane having to give notice to a job he loves because I had no way of doing bleach baths and bandage changes on my own while he travelled. DEBRA stepped in and offered us help and he was able to go back to work and not worry about how we were managing at home. This is the second fundraiser we have done and we have raised nearly $700 now. We plan to continue doing our fundraisers every time they hold a twilight market.”
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Jess, Charlotte and Shane at the markets supporting DEBRA
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Major Donors
- Fredrick Gordon P/L - $1,000
- Carey Baptist Grammar School - $4,292
- Betty Radford Discretionary Trust - $5,000
- Eliza Braitling Foundation - $9,818
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EB Research and Education
Research and Education Travel Fellowships 2020
DEBRA Australia is pleased to call for applications for its 2020 Research and Education Travel Fellowships. These grants are intended to foster professional development for early career scientists or health professionals to improve the health and wellbeing of children and adults with Epidermolysis Bullosa (EB).
This year up to $8,000 will be available for distribution. The number and mix of Fellowships awarded in each round may be varied at the discretion of DEBRA Australia's Board of Directors, depending on the applications received. At least one award will be made to a nurse involved in EB care. The maximum grant which will be awarded for travel to Europe or the USA will be $3,500. Up to $1,200 may be awarded for travel to meetings in Australia and New Zealand.
Apply for the 2020 Research and Education Travel Fellowships here.
Closing date for applications has been extended to 31 May. Eligible travel would need to be completed by 31 May 2021.
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February 2020 Research Grants Allocated
DEBRA received 5 grant applications in the last round closing in December. The applications were peer reviewed by DEBRA International and have been allocated to the following researchers:
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Associate Professor Kenneth Pang (Murdoch Children’s Research Institute Melbourne VIC)
Grant funding: $39,528
Project: Identification of effective analgesics for Dystrophic EB
Epidermolysis Bullosa (EB) is frequently associated with significant pain. This pain is typically treated with a range of different analgesic medications, but unfortunately such analgesia can not only cause significant side effects but is often ineffective. In this project, we will compare the pain-relieving effects of various known and novel drugs in an effort to identify more effective therapeutic strategies for treating EB-associated pain.
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Dr Zlatko Kopecki (University of SA) and A/Prof Sarah Vreugde (Adelaide University)
Grant funding: $30,000
Project: A new medical surgical hydrogel for improved healing of infected blister wounds
Skin blistering diseases (Epidermolysis Bullosa (EB)) affect 1:17,000 live births with 500,000 cases estimated worldwide. EB children experience large non-healing wounds and spontaneous skin blistering affecting 70% of their bodies. Infected wounds are a constant problem for EB patients and often lead to sepsis and death. This project aims to develop a new safe and effective hydrogel treatment for infected blistered wounds which could lead to significant impact on the lives of children and adults living with EB.
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Associate Professor Albert Mellick (University of NSW)
Grant funding: $10,000
Project: Assessing severity and progression in EB
Recessive Dystrophic EB (RDEB) patients have problems with their skin. This includes blistering and wounding. In addition, the squamous cell carcinomas (SCCs) that arise in RDEB patients are much more lethal than SCCs that arise in the non-RDEB population. Understanding how RDEB skin differs from other non-EB patients, is the major objective of the project. We will use advanced methods in tissue analysis, and an international collaboration between EB Austria and the Ingham Institute for Applied Medical Research; to understand changes in the skin of RDEB patients, and how they relate to the development of RDEB-SCCs, as well as severity of disease.
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DEBRA International
EB 2020 Congress
EB2020 the Global EB conference was held in London in January over 4 days from the 19 – 23. It was attended by close to 700 people, including researchers, clinicians, DEBRA organisations and families from over 50 countries. Australia was well represented with over 15 attendees!
DEBRA Australia was able to support our nurses, researchers and a couple of our staff to attend to learn, broaden our EB knowledge and network within the global EB community on your behalf. We also participated in 4 of the 6 small side forums, along with representatives from other DEBRA International groups, in the areas of Advocacy, Marketing and Awareness, Family Support and Fundraising – which was a great opportunity and honour to be invited to attend. In addition, our Family Support Coordinator Simone, participated in two panel sessions to work on clinical practice guidelines for both palliative care in EB and EB transition.
It was a very busy few days, however extremely educational, interesting and beneficial for those of us who attended. We can now implement those learnings to assist you, our Australian EB community.
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From left front: Laura Iacobaccia (Podiatrist), Lauren Weston (VIC Paediatric, Transitional & Adult EB Nurse), Lise Angus (DEBRA Australia General Manager), Simone Baird (DEBRA Australia Family Support Coordinator), Jenny Marty (DEBRA Australia Chair), Back: Dr Zlatko Kopecki (DEBRA Australia Director/researcher) and Blake Smith (Researcher).
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Painting on My Skin: EB and Me
"I grew up in a Mallee town without a doctor, with a painful skin condition known as EB. Over time I learned to think of EB as an artist who used my body as a canvas."
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Upcoming Events
- May: PB4EB
- June 12th: Tee Off For EB - POSTPONED
- October 25th: Walk For Wings - Sydney, Melbourne, Adelaide, Brisbane
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