Currently there is NO national system in place for people with EB, to access dressings via the public health system. Many people with EB in Australia have to buy their own dressings or have support from DebRA and other community groups. Thousands of dollars are spent by DebRA each year on dressings, that funding could be put towards research to help find a cure.
DebRA Australia has had meetings with the Health Ministers department to lobby for a National EB Dressing Scheme. People with EB and their families suffer enough without having to worry about where their next dressing is coming from. EB is an “orphan disease” due to there only being 1000 people with EB in Australia. Other countries like New Zealand and the United Kingdom have a national dressing system in place where all people with EB get supplied their dressings free of charge. It is about time people in Australia had the same support. Updates on progress will be published in the 6 monthly newsletter.
Running Marathons to Raise Money
Runners from all
round Australia are
participating in marathons to raise much needed funds for DebRA Australia. Money is donated online via the Everyday Hero website, it is a great concept and works really well for all involved.
Are you an experienced runner, someone looking for a new challenge or just want to take part in a fun run? If so, why not push yourself to the limit and take part in a marathon for DebRA Australia.
To raise money for DebRA and gain sponsorship from friends, family and work mates, it is as easy as registering with Everyday Hero on www.everydayhero.com.au where their motto is “Living is Giving”. Throw a challenge to friends and also them them involved.
There are different marathons held across Australia that you could be a part of. Some of these include:
- Bridge to Brisbane - 7th September 2008
- Sydney City to Surf - 10th August 2008
- Perth City to Surf - 31st August 2008
- Run Melbourne - 22nd June 2008
- City to Bay (Adelaide) - 21st September 2008
In 2007 supporters ran in the Bridge to Brisbane and City to Surf and raised over $6,000 for DebRA Australia. Aussies and Englishman living in the UK also ran in the London marathon to raise money for DebRA (as pictured in the photo below). Peter Freeman (back row - centre) raised funds for DebRA Australia along with Nikki Weiner and Angus Wilson who are working in the UK.
Check out some of our current runners and lets make this year bigger and better:
Trek for EB: 5th - 15th August 2008
Leigh Dunstan, the son of Nu Skin Enterprises Executives Jenny and Mark Dunstan, and Leigh’s wife Kylie are joining a group made up of the families of EB sufferers in Melbourne and trekking the Kokoda Trail in Papua New Guinea between the 6th and 14th August 2008. Their aim is to raise much needed funds and awareness for EB in Australia, and Leigh and Kylie are hoping we can all assist in their efforts.
The organisation Nu Skin Enterprises Australia supports in raising awareness of Epidermolysis Bullosa (EB). Nu Skin Enterprises Australia produces bi-annual newsletters for DebRA and has sold DebRA merchandise in the past for their annual Butterfly Day campaigns. Now DebRA Australia has another campaigner from the Nu Skin Enterprises family.
Why Kokoda?
People who trek Kokoda go through enormous suffering, it can be a life changing experience; the struggle will be profound. The EB sufferers and their families face unbelievable suffering on a daily basis, but unlike the Kokoda trekkers who can take a hot bath wash and take a week off to recover when they get back, the EB sufferers and their families have it from the moment of birth every day for the rest of their lives.
Pictured right: Liam (centre - front) and Earl (centre - back)
are members of DebRA VIC. They are
pictured here with other DebRA supporters at
an auction night held in June this year. The
night was a huge success and $50,000 was
raised for DebRA VIC thanks to the help of
Kylie & Leigh Dunstan and Nu Skin
Enterprises.
Pictured left: A group of corageous trekkers practising for the Kokoda
Trek. Gruelling training sessions have been held on a regular basis for
months, one excercise includes trekking up the 1000 steps at Mt
Dandenong. DebRA has full admiration for all of the volunteers who are
taking place in this fundraising / awareness campaign. Also a big thank
you to Leigh and Kylie for initiating and organising the Kakoda Trek.
How You Can Help
- To help promote their trek for EB, Leigh and Kylie Dunstan have created a blog www.trekforeb.blogspot.com. Please visit the site and forward the link on to others who may be able to lend their support.
- Leigh and Kylie will be holding a fundraising auction and banquet on Saturday 24th of May, to be held at the Springvale Town Hall, Springvale, Victoria. If you can help with donating items for the auction, or if you would like to attend, please email kldunstan@iprimus.com.au. All of the proceeds from the auction and the ticket sales will be donated to DEBRA Australia.
- You can make a donation to assist DebRA Victoria with their campaigns by emailing secretary@debra.org.au
