DebRA is a National charity that supports DebRA State organisations, individuals and families affected by Epidermolysis Bullosa (EB), a rare genetic condition which causes the skin to blister at the slightest friction or even spontaneously.  There are approximately 1000 people living with this devastating condition in Australia and 500,000 people world wide.  If you would like to find out more about DebRA and their work please email secretary@debra.org.au
 

 

  

 

Everyone in the DebRA Australia camp is getting very excited about the 2009 DebRA National EB Camp being held at the Crowne Plaza in Pelican Waters, QLD.

 

There will be interesting guest speakers and workshops for the parents to attend to learn more about dressings, genetics, research and promoting independence.  For the kids there will be opportunities to get along to some adventurous excursions, including Laser Skirmish, a giant Maze, Underwater World and a boat cruise in the beautiful Pumistone Passage and past the lovely canal homes. 

 

Families are welcome to attend Australia Zoo on the Friday as a family day out.  Entry will be at the cost of the family.    There will also be plenty of great indoor activities, movies and events going on too, for those who want to stay indoors.  All of the indoor games and activities will be led by qualified nurses and carers, and our lovely volunteers.

 

 

We hope to see many of our members at this year’s EB Camp.  Not only is it a great way to learn about the latest research, best practice techniques and new dressings, but most importantly it gives the kids a chance to escape their reality for a while, and have fun with others who understand their situation.  And of course, it gives the parents a well-deserved respite from their tremendous responsibilities too.

 

Registrations forms have been posted out in the latest newsletter or are now available online, or by emailing secretary@debra.org.au  Closing date for registrations is the 5th April 2009. 

 

Please register as soon as you can, and come join us in June, for the best DebRA conference yet! Download the Conference Program.

 

 

 

 

Joy to the World

DebRA Australia and DebRA International recently spread their supporting arms out to a young EB neighbour in the Philippines.  Joy is only 7 years old and due to her painful condition, her mother carries her to and from school each day. The wearing of slippers rubs the skin off her feet. The family do not have enough money to travel to seek medical support or find out the best course of action or treatment on how best to help Joy.

 

DebRA heard of Joy’s plight via the internet and after doing some investigation it was ascertained that this cause was a worthy one.  DebRA Australia, the Philippines’ closest DebRA neighbour, contributed $600 for travel, accommodation and urgent testing and treatment. Another DebRA organisation sent dressings while other countries are rallying around with their support.

 

Dan and Vangee in the Philippines, who are organising treatment for Joy, have expressed their gratitude and are overwhelmed with the response.

 

Dan is keeping everyone up to date with a blog site where you can read about Joy’s progress, and photos of Joy with her specialists are also available on another website.  http://joyinchrist.wordpress.com/joys-tripto-manila-2009/

 

 

 

 

Paul Newman’s Own Foundation Donates to DebRA Australia

DebRA Australia has been fortunate to receive much needed funding to support EB members all round Australia with medical supplies. The Paul Newman Foundation is donating another $1 million to Australian charities this year, illustrating that the mission will continue.  Paul Newman’s legacy will be honored by the dedication to continue the success of Paul Newman's Own and helping people in need.
 
Newman always said he had never had a problem with using his celebrity status to promote his hugely successful quality food products, which is best summed up in his tongue-in-cheek branding tagline - “Shameless Exploitation in the Pursuit of the Common Good”.
 
All of the profits from the Paul Newman’s Own range of salad dressings, pasta sauces and mayonnaises are given to charity, a legacy which will continue into the future.
 
A deeply humble man, Paul Newman often commented that he was prouder of his achievements as a chef than as an actor and he credited the real success of his salad dressings, pasta sauces and mayonnaises to their delicious flavours and his insistence on using only the finest quality ingredients.
 
This year, twenty-six charities from around Australia will each receive donations of up to $50,000 for nominated special projects. 
 
These donations bring the total funding to more than $12 million to both large and small  charities across Australia since the first Paul Newman’s Own product landed on supermarket shelves 25 years ago, and over $250 million to charities globally.
 
The grants will be used to assist each charity with purposes ranging from the purchase of a car to help those suffering with cystic fibrosis, organising holiday camps for disabled children, the training of assistance dogs for children with autism, to setting up a self-help group for people with multiple sclerosis.
 
Newman’s Own Foundation spokesperson, Sue Home, said the success of the Paul Newman’s range of pasta sauces, salad dressings and mayonnaises here has resulted in donations to over 700 Aussie charities since 1985.
 
“The success of the Paul Newman’s products here means we are able to return the profits back to Australian charities. Paul always went out of his way to donate to the smaller charities which can be easily overlooked, but it’s still hard to make the final decisions - they all do such wonderful work.”
 
Paul Newman will greatly missed, but his vision for the Common Good will be honoured through dedicated stewardship of his company that will perpetuate his philanthropic legacy. Paul wouldn't have it any other way.
 
 
For information on Paul Newman’s Own products, please visit www.paulnewmansown.com.au