An encouraging and informative letter to those with EB simplex from Matt.

My name is Matt I'm 20yrs old and have the simplex form of EB I was reading some of the letters on this web sites and thought I may give you advice on what I used to do as I lived my child/teenage years.

I noticed that people pop the blister, I found out if you pop it, it forms a crystal cover and keeps growing so I was taught by my father who also was born with EB to cut the head of the blister with small scissors and have a salty bath if the ocean is no where around.

Now that I've moved from Tamworth to Sydney the ocean is accessible to me and have noticed the change in my skin. People ask about it and say you can't do some jobs because of it but currently I'm doing my mechanics trade and I hardly have any problems, I get the occasional hard blister every now and then but most of the time now you don't evan know I have it.

Thanks 4 your time Matt

ed. Thank you!

Big warm thank you to Kathy and David Hagan

A large donation has been made from Kathy and David Hagan (Toowoomba) has been made to one of our DebRA QLD members - they have purchased a new lap top computer and printer to replace the old computer that had to go! A very special thank you to Kathy and David for their generosity.

Mr Barry Stewart

Thank you to Barry Stewart from Kingaroy for his regular money donations over the 2004 / 2005 period

African Violet Society of Queensland Inc.

Dean Clifford - DMC Motivational Speaker

Hi to everyone,
I just thought I drop you all a quick line to update everyone on my activities.

The past 6 or 12 months have been an awesome ride. After Speaking at the ACE (Association for Competitive Employment) conference up at the Sunshine Coast I was then asked to become their First ever Official Ambassador. With that role it means I am a spokesperson for The Disability Employment Industry. Helping to promote opportunities for disabled people. It's been really interesting and hopefully I can help highlight all the possibilities for all the Disabled people especially with the current purposed changes to the Disability Support Pension and everything like that, it's been a pretty interesting time.

I have recently set up my own business as a Motivational Speaker. It's been going great. I am still getting my name out there so it's a tough slog but great fun.

In March I headed off on my first interstate trip as a Speaker. I was in Canberra for a couple of days speaking for an Employment company in Canberra. It was great fun although incredibly busy. My role as ACE Ambassador took me to a meeting with the Federal Minister for Workforce Participation the honourable Peter Dutton. That was very interesting. In the coming month's I'll be meeting up with him again for a trip around Kingaroy to highlight some of the businesses that employ disabled people in the South Burnett. I'll also be doing one of my speeches to a select number of people so that should be interesting. I'm really looking forward to it.

Things are only still in the very early stages but it's awesome at the moment and I am having a ball with everything at the moment.

Just recently I was mentioned in State Parliament as someone who should be considered as a potential Queensland Ambassador which came as a huge shock and honour for me. I personally don't rate myself in that regard however it is a privilege just to be considered in that light.

I will leave it there I guess. If you want to keep up to date with all my activities or if you want to help support me as a potential Qld Ambassador you can check out my website at DMC and contact me through the Contacts page on the website or you can just keep an eye out in this newsletter as I'll try to let you all know exactly who to contact when I find out more.

Anyway I really appreciate all the support from all the Debra members.
Cheers Dean.


Dean Clifford
Motivational Speaker
www.deanclifford.com.au

Ergon Energy supports DebRA Queensland

Below is an excert from the response Ergon returned in regard to the Toowoomba annual dinner dance. We are very appreciative of Ergon's stand on this matter. As mentioned in Sue and Paul's article, Ergon were responsive on the night and did everything they could to help resolve the situation. Their kind actions have helped DebRA Queensland, we extend our gratitude to them for their generous support and would like to congratulate them in return for their appreciation of DebRA's cause.

"After considering the circumstances surrounding the loss of power at your dinner-dance, we would like to offer $1000 in support of the fund-raising efforts for Debra-a Queensland. We believe this is the best way to assist your group....

We appreciate your patience and assistance in helping us resolve this matter. We would also like to congratulate you and your group for the work you are doing to raise funds for such a worthwhile cause.

Ergon Energy does provide sponsorship support for local charity events and we would be more than happy to consider a submission from your group to assist any future events."

Larrakin legend and the ladies dinner dance March 2005

Sue Holley and Paul McKenna have held their third Larrikin, Legend and Ladies Dinner Dance on the 12th March this year to raise money for Debra Qld.

The night was successful despite the power being off at the Irongate Hall for 6 hours! A transformer across the road went out of action at 6.30pm (half an hour before the dinner dance started!) and was fixed at 12.30am. Ergon Energy crews from Millmerran and Toowoomba worked tirelessly for the 6 hours to try and restore power as soon as possible. Most of the dinner was cooked in camp ovens and gas ovens so the power did not have to be relied on too heavily - although the veges were a bit crunchy.

Entertainment for the night included Tom Lee Archer (singer), Dean Clifford (guest speaker from Brisbane) and Paddy Dunne (Owner / Auctioneer from Toowoomba Auction Centre) who all donated their time and efforts.

The night was pretty quiet music wise and there were several comments that it was nice to be able to hear people talk and get to meet new people like when the power goes off at home and there is no TV. A generator was sourced by the Ergon Crew so music by Tom Lee Archer kicked in at about 11pm. Tom won the Larrikin, Legend and Ladies Dinner Dance perpetual trophy for his huge donation of entertaining the guests for the last 3 years.

Guest speaker Dean Clifford who sufferers with severe EB, gave a speech about what it was like to have the condition and some of the struggles. Not dwelling on the fact that it is a genetic condition that can not be cured and there is constant pain involved due to skin blistering. Doctors told Dean's parents that he would not live to be 5 years old. It takes up to 3 to 4 hours for Dean to carry out daily bathing and dressing routines with a carer. This means he is used to getting up very early if he has an 8am appointment! Dean is now the National Ambassador and motivational speaker for ACE, the national peak body for Disability Employment Services. His next trip was to do a speech in Canberra and Sydney later in the month and will also be appearing on 60 Minutes and Current Affair in March / April. Aster Motel in Toowoomba generously donated Dean's accommodation for himself and a carer.

Paddy Dunne was great entertainment auctioning off 5 items which included a new TV he donated. He may be wishing his wife did not attend the dinner dance as she purchased the TV back and the great 2 seater wooden bench made by Tom Lee Archer. Other auction items included an oil painting donated by Margaret Taylor - Sunshine Coast Artist, the Bush Cooks and a signed CD pack from John Williamson and Tom Lee Archer.

Sue and Paul are very grateful for all of the donations contributed to the dinner dance and friends who helped out (they know who they are.. too many to name). Mary and John Gentle from Pittsworth IGA generously donated the $300 worth of soft drinks and groceries when they heard about the power outage problem. Other local businesses who donated prizes, cash and support were :

There were also donations from businesses in Toowoomba to make up the 40 prizes for the night.

Your generosity is appreciated by people with EB!

The ongoing support of the local community and businesses has again made it possible to pass on over $3,200 to sufferers with severe EB to improve their quality of life. 100% of this money is used for that purpose as Debra-a Qld is run totally by volunteers and there is no Government assistance.

From Sue and Paul, a huge thank you to all involved.

Stockholm - DebRA Europe conference - May 2005

DebRA Australia Delegates Report on Epidermolysis Bullosa

LARRIKIN LEGEND AND LADIES DINNER DANCE 2005

Sue Holley and Paul McKenna have held their third Larrikin, Legend and Ladies Dinner Dance on the 12th March this year to raise money for Debra Qld.

The night was successful despite the power being off at the Irongate Hall for 6 hours! A transformer across the road went out of action at 6.30pm (half an hour before the dinner dance started!) and was fixed at 12.30am. Ergon Energy crews from Millmerran and Toowoomba worked tirelessly for the 6 hours to try and restore power as soon as possible. Most of the dinner was cooked in camp ovens and gas ovens so the power did not have to be relied on too heavily - although the veges were a bit crunchy.

Entertainment for the night included Tom Lee Archer (singer), Dean Clifford (guest speaker from Brisbane) and Paddy Dunne (Owner / Auctioneer from Toowoomba Auction Centre) who all donated their time and efforts.

The night was pretty quiet music wise and there were several comments that it was nice to be able to hear people talk and get to meet new people like when the power goes off at home and there is no TV. A generator was sourced by the Ergon Crew so music by Tom Lee Archer kicked in at about 11pm. Tom won the Larrikin, Legend and Ladies Dinner Dance perpetual trophy for his huge donation of entertaining the guests for the last 3 years.

Guest speaker Dean Clifford who sufferers with severe EB, gave a speech about what it was like to have the condition and some of the struggles. Not dwelling on the fact that it is a genetic condition that can not be cured and there is constant pain involved due to skin blistering. Doctors told Dean's parents that he would not live to be 5 years old. It takes up to 3 to 4 hours for Dean to carry out daily bathing and dressing routines with a carer. This means he is used to getting up very early if he has an 8am appointment! Dean is now the National Ambassador and motivational speaker for ACE, the national peak body for Disability Employment Services. His next trip was to do a speech in Canberra and Sydney later in the month and will also be appearing on 60 Minutes and Current Affair in March / April. Aster Motel in Toowoomba generously donated Dean's accommodation for himself and a carer.

Paddy Dunne was great entertainment auctioning off 5 items which included a new TV he donated. He may be wishing his wife did not attend the dinner dance as she purchased the TV back and the great 2 seater wooden bench made by Tom Lee Archer. Other auction items included an oil painting donated by Margaret Taylor - Sunshine Coast Artist, the Bush Cooks and a signed CD pack from John Williamson and Tom Lee Archer.

Sue and Paul are very grateful for all of the donations contributed to the dinner dance and friends who helped out (they know who they are….. too many to name). Mary and John Gentle from Pittsworth IGA generously donated the $300 worth of soft drinks and groceries when they heard about the power outage problem. Other local businesses who donated prizes, cash and support were :

• Ashton's Butchery
• Pittsworth Shire Council
• Christine Ruhle
• White Mischief
• Cains Gift Store
• Incitec
• McKinlay Nursery
• Pittsworth Newsagency
• Pittsworth Mitre 10
• Whittakers Electrical
• Burwood Stud
• Faux Electrical
• Wheatsheaf Bakery
• Australia Meat Holdings (Beef City)
• Aubigny Hotel
• Pittsworth Hotel Motel
• Tatts Hotel
• Raff Farm Supplies
• Pittsworth Fruit Centre
• Ren's Flooring
• Lilly Pilly Place
• ANZ Bank
• Commonwealth Bank
• Wendy's Professional Hairdressing
• Amazing Soaps
• Pittsworth Leagues Club

There were also donations from businesses in Toowoomba to make up the 40 prizes for the night.

The ongoing support of the local community and businesses has again made it possible to pass on over $3,200 to sufferers with severe EB to improve their quality of life. 100% of this money is used for that purpose as Debra-a Qld is run totally by volunteers and there is no Government assistance. From Sue and Paul a huge thank you to all involved.

(BRAVO Paul, Sue and the people of Pittsworth! - webmaster)

South Australian Newsletter - 1st Edition

South Australia newsletter has posted a by Meredith Yates and can be found at http://www.lifeskillscoaching.biz/eb.html.

Pommie to run London Marathon for Aussie Kids, dressed as a butterfly! : Written by Mr Peter Freeman

Londoner Peter Freeman will attempt to run The Flora London Marathon on April 17th wearing a giant pair of butterfly wings to raise money for Australian kids with the genetic condition EB. Peter, whose late father was from Sydney, already had a place in the marathon when he learned about EB while researching his family history on the Internet. "Dad came to England after the war, married and settled down, but I have always felt real ties to Australia and really loved the time I have spent there, so when I came across a website about EB in Australia I thought I would do what I could to help".

EB is a genetic condition in which the proteins which bind the layers of skin together do not work properly, leaving the skin prone to damage from blistering and scarring. Even a hug can cause damage; as a consequence the day for a child with EB will start with lengthy and painful changes of dressing, and any blisters having to be punctured to protect the skin from further damage. EB also affects the linings of the throat and gut making eating also difficult and painful.

"As the father of two healthy kids (both qualified to wear green and gold through their granddad, but I won't mention English Rugby as it's a bit embarrassing now) I was shocked by the daily pain and anguish these children suffer and the thought that how lucky my family was. From that running the London Marathon dressed as a butterfly was an easy decision to make and while I won't be overtaking Benita Johnson I hope to do something to help Aussie kids with EB. If only by raising awareness of what has been described as the worst disease you have never heard of!"

Peter worked on cattle properties in New South Wales before going to University, and visited again with his wife and children for his 20th Wedding Anniversary in 2001. He also ran the 2004 Lest We Forget Run in London in memory of his father Sam and his colleagues in the Australian forces. The 45 year old hopes to finish the 26.2 miles in under 4 hours despite the extra burden of his wings.

(Above) - Peter Freeman, Jadine and her mum

(Above) - Peter Freeman at the Bath Marathon

Charitable Australians

In light of the disaster in Asia we would like to reflect some more acts of kindness from very special Australians.

Mr Barry Stewart - January 6th, 2005.

Mr Barry Stewart has been a long standing supporter of Debra Queensland and he has donated a grand sum of $5000.00 from his own pocket. We are very thankful for his support and wish to thank him sincerely for the donation. This donation originates from Kingaroy Queensland well known for it's peanuts and now for it's generosity.