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The latest news from DEBRA Australia

DEBRA News December 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

The Family Support program has received many applications over the past few months. The program helps to support families with various needed items such as medical supplies, comfortable fitting shoes, podiatry, counselling services, quality of life and much more. Thanks to the program, Amelia Page was able to fulfil her dream of spending quality time with her family at Dreamworld on the Gold Coast, Queensland.  An iPad was recently purchased for another family who are restricted with movements during the summer months and additionally, new knee pads for little Kylan who is about to start crawling. Our program is also able to support families during the summer months with energy rebates for their air conditioning. If you require more information about the Family Support program please email Simone.baird@debra.org.au or call Simone on 0413967609.

Kylan with his new knee pads

Amelia and her brother at Dreamworld for a fun day out.

Follow Yours Dreams Grant 2019

Dean from Queensland was awarded the 2019 Follow Your Dreams grant to fulfil his dream to go to Las Vegas for his 40th Birthday. As the previous year’s grant was not used to the full allocation, the committee awarded $2,000 to Dean to go towards his dream holiday.  Dean has recently become an official Ambassador for DEBRA and we wish him all the best for his birthday, which was at the beginning of this month. We appreciate all the time and effort he puts into helping share the word about DEBRA and EB.  Congratulations Dean for reaching this amazing milestone!

Dean Clifford, arriving in Las Vegas for his 40th Birthday celebrations.

Kate Turner Fund Grant 2019

Lisa from Melbourne had always wanted to go on a cruise ship and thanks to the Kate Turner Fund grant for topping up the amount needed; Lisa was able to book her dream trip. In Lisa’s words, “we had a wonderful time on our 7-night cruise to South Australia on the Golden Princess with my friend Rob and two support workers, Tiffany and Linda. The ship was very swish! Our favourite day was going into Adelaide and catching up with friends and founders of the Kate Turner Fund, Linda Turner and Laraine Frost. I am so grateful to the Kate Turner Fund grant for making this trip possible”.

Linda, Rob, Tiffany and Lisa with the wait staff, aboard the Golden Princess with wait staff.

Linda Turner, Linda, Lisa, Tiffany and Laraine Frost catching up in Adelaide.

Kerrie from NSW was awarded a $2,700 grant from the Kate Turner Fund to purchase a much needed mobility scooter. Kerrie had exhausted all other options of funding and turned to DEBRA to seek help in assisting her to be mobile outside of her home. Kerrie now enjoys the freedom to go down town to do her shopping.

DEBRA Events

Walk for Wings

Together as an EB community we hit the walkways across the country in Adelaide, Brisbane, Melbourne and Sydney to kick off our EB Awareness Week with “Walk for Wings”.

Over two weekends, nearly 600 people took to the pavement and caused a wave to raise much needed awareness and funds for DEBRA Australia in our first ever National walk for our EB community. Without our invaluable supporters we would not be able to deliver our programs, and with your help we not only raised much needed awareness, but we raised critical funds to help support our life changing programs.

The event raised over $16,000 for our programs and we can’t wait to see you next year for an even BIGGER and BETTER “WALK FOR WINGS”.

You can see more photos from each of our locations by clicking here

Adelaide

Brisbane

Melbourne

Sydney

Run for EB

Runners in Brisbane, Sydney, Melbourne and even the Petra desert in Jordon, have completed marathons to support families living with EB. Collectively they have raised nearly $11,000 which is an amazing result. Committed families living with EB, students, friends and health professionals all joined in. Be sure to check out the Run for EB calendar for 2020 to find a local event near you.

Westpac 2019 Sun Herald City 2 Surf runner Kylie Gibson

Melbourne Marathon Festival 2019 runner, Emma Minney with her family.

Sunday Mail Bridge to Brisbane Team 2019

International EB Awareness Week

International EB Awareness Week is held every year, 25 – 31 October. Families and supporters around Australia hold different events to raise awareness and bring the community together.

Butterfly Connection

Lizzie Carr and Anne Howard from Toowoomba, along with their committee of volunteers organised a Dine & Donate event on the 23rd October. The “Butterfly Connection” luncheon was held at the Wellcamp Airport outside of Toowoomba, Queensland. The 126 guests were entertained by guest speaker Belinda Murphy, Mayor of McKinlay Shire, Queensland. Belinda, who is a Mother, florist and pilot, talked about enduring the hardships which her community members have experienced during the drought and floods in North West Queensland. She also talked about people being resilient which resonated with her hearing about families living with EB and how they cope. DEBRA Ambassadors Dean Clifford, Matt Bevilacqua and his partner Brielle Cooper also came along on the day to help out. Nearly $14,500 was raised which will help support families living with EB. Images are by John H Todd who was volunteer photographer on the day. A big thank you to the volunteer committee, guests, donors and supporters for making the event a success.

Belinda Murphy (guest speaker)

Lizzie Carr (organising committee member)

Matt Bevilacqua (DEBRA Ambassador) and partner Brielle Cooper

Dean Clifford talking with guests at the Butterfly Connection event

Helen Fletcher MC and guests

Butterfly Connection Supporters

Sydney Dine & Donate

Each year Mary Woods (DEBRA Director) and daughter Kylie Gibson (DEBRA Committee Member) hold a Dine & Donate event on the back deck for their family and friends. They gather lots of raffle prizes to help raise funds and plenty of fun is always had. The ladies raised $1,370 to go towards DEBRA’s life changing programs.

You can hold a Dine and Donate event at any time of the year. You can find out more information here.

Mary Woods (DEBRA Director) and daughter Kylie Gibson (DEBRA Committee Member)

Show us your Seams

Heidelberg Primary School love to support DEBRA Australia and all our EB families throughout the year. They recently held a fundraising day where students wore their clothes inside out to “show us your seams”. This is what it is like for some children living with EB as the seams on their clothes rub and cause blisters. The kids were able to buy some fun DEBRA sunglasses and merchandise and it was such a great success that they are selling more merchandise before the end of the year. A whopping $1,279 was raised on the day and a great way for the children to give back as a school community.

What's On

DEBRA Christmas Appeal

We are getting closer to lighting up the tree for all our families this Christmas to give HOPE. You can help by buying a star which will help Light up the Tree.

Light Up The Tree

DEBRA Supporters

Future Generation (FGX)

Ongoing support from FGX has been invaluable to fund the EB Services on a national basis. FGX recently donated $243,977 as their annual contribution to keep these essential services going. These services include the hospital based and in-home nurse positions and counselling program. DEBRA delegates were invited to attend their birthday celebrations on the day and Dean Clifford (DEBRA Ambassador) was asked to speak along with other charity ambassadors. A big Happy 5th Birthday to FGX and all who are involved for making such a huge difference!

Dean Clifford (DEBRA Ambassador) presenting with other charity representatives at the FGX birthday celebrations, Joanna Griggs (left) and Georgie Gardner (right)

Louise Walsh (FGX CEO), Mary Woods (DEBRA Director) and Dean Clifford (DEBRA Ambassador) catching up at the FGX Birthday celebrations in Sydney.

Summit to the Sea - Kayak Trek

At the end of October, 86 year young Kenny Stephens started his kayak down the Murray River on an epic adventure, 'The Summit to the Sea'. Starting at Bringenbrong, just below the river source in NSW and ending at the Murray mouth in South Australia. Kenny will take on a distance of approximately 2,500kms, taking two to three months and will be fully self-sufficient along the way. Kenny is hoping to see as many people as possible along his route and you can follow his journey by checking his GPS.
https://share.garmin.com/38PKM

Kenny will be supporting DEBRA Australia on his epic journey and would love you to donate and help him reach his target of $5,000 for all our EB families.  https://everydayhero.com.au/event/summittosea

Kenny on his adventure down the Murray river

Robinson’s Fresh Solutions celebrate 50 years in business

Mark & Di Robinson distribute fruit and vegetables from the Melbourne Market Authority to the whole of Victoria. Over 100 people gathered to help celebrate their success. Mark and Di are strong supporters of the Melbourne Market Golf day and promised to display the DEBRA logo on their next new semi-trailer which was unveiled on the day. They are very proud and excited to display the DEBRA logo all through Victoria in an aim to create more awareness.

Mark and Di Robinson with Simone Baird (DEBRA Family Support Coordinator) at the unveiling of the DEBRA logo.

Toombul Bowls Club

The Toombul Bowls Club in Brisbane has been long-time supporters of DEBRA and each year Dean enjoys attending the cheque presentation event. This year the club donated $1,540 to help support families living with EB. Thanks to all the lovely bowlers for your ongoing support.

Dean Clifford (DEBAR Ambassador) at the cheque presentation with Maureen from the Toombul Bowls Club

Ravenswood Hotel

Long-time supporters from Ravenswood Hotel in WA, Jenny and Dave, have donated $1,900 from their ongoing money tin collections.  A big thank you from DEBRA to all the staff for your ongoing support. If you are ever in the area make sure you call in and have a meal or a drink and say g’day!  More information at https://www.ravenswoodhotel.com.au/

Molnlycke Healthcare

Recently Dean Clifford (DEBRA Ambassador), accompanied by Lise Angus (DEBRA General Manager), visited the staff at Molnlycke in Sydney to have a lunch and speak about his journey and inspirational story with EB. The staff had the opportunity to learn more about EB and DEBRA and it was a great opportunity for DEBRA to connect with the staff. Recently they made a $2,000 donation to the Bogan Bash event held in Melbourne last year organised by Lisa Brains and her committee of volunteers. Molnlycke also had a team turn up to the “Walk for Wings” Sydney event to hit the pavement along with the other keen participants.

Dean meeting the staff at Molnlycke Healthcare in Sydney

Major Donors

  • Fredrick Gordon P/L $1,000
  • Gremmo Homes $1,050

EB Research and Education

For the last two years DEBRA Australia has funded research in the Mellick Lab at the Ingham Institute for Applied Medical Research, Liverpool Hospital.  The research project is focused on the diagnosis of cancer in patients with Recessive Dystrophic EB (RDEB). In Australian society death from Squamous Cell Carcinoma is relatively rare; however in the RDEB population it is much higher. The aim of this work has been to develop a relatively non-invasive liquid biopsy-based approach for identifying cancer cells in the blood of patients. As part of the work, Hannelore Bodocian from EB House, Salzburg, has recently completed an internship in the Mellick Lab.

Working with team leader Dr Albert S. Mellick and clinical research students, Moksha Sha and Jun Yu Lai, as well as members from the CTC facility, Ingham Institute for Applied Medical Research, Hannelore’s work has helped to progress the development of an objective filtration-based approach to detecting cancer cells in the blood of EB patients. The ultimate aim of the work is to detect cancers early and encourage regular screening to improve treatment and outcomes in patients.  In addition, to the tools that Hannelore is helping to advance, her time in Australia, will greatly enhance existing linkages between EB researchers in Australia and those working internationally and allow for continued exchange of technologies and information that will benefit research in EB worldwide.

Jun Yu Lai (clinical research student), Hannelore Bodocian (from EB Haus – Salzburg, Austria), Moksha Sha (clinical research student), Dr Albert S. Mellick (Ingham Institute for Applied Medical Research, Liverpool Hospital, Sydney)

DEBRA International

EB Clinical Practice Guidelines (CPG’s)

In the previous DEBRA newsletter we shared the DEBRA International Podiatry and Psychosocial CPG. As promised, in this edition there are two more new CPG’s to share:

DEBRA International Surveys for Best Practice Clinical Guidelines Research

Please take some time to have a look at the surveys from DEBRA International to complete if relevant. 

Upcoming Events

  • January 19 – 23: EB 2020 Congress (London UK)
  • March 6 – 9: Brighter Days Festival (Bright VIC) https://www.brighterdays.org.au/
  • March 13: Melbourne Market Charity Golf Day (Heidelberg Golf Club VIC)
  • May: PB4EB
  • June 12: Tee off for EB (Roseville Golf Course Sydney NSW)

Thank you for your support of DEBRA Australia and the work we do.

Our office will be closed from Monday 23rd December until Monday 6th January 2020. For any Family Support during this period please contact us on 0427 937 003 or you can email admin@debra.org.au.

Supporters

  

  

     

Copyright © 2019 DEBRA Australia, All rights reserved.


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