Fundraiser Details

JOIN US for an all-day charity fundraiser

at the Safari Bar & Grill,

60 Randall Drive, Ajax

Sunday, January 15th, 2012,

11am - 11pm

"What is EB?"

"It's the worst disease that you never heard of

It will be a great time for all! A fun-filled day of  Tattooing,

face painting, silent auctions, food, beverages, billiards and more!

Local Freelance Tattoo Artists will be tattooing a selection of Butterfly Tattoo’s

(permanent and non-permanent) in exchange for your monetary donation.

Designs vary from simple to more complex,

or email us your image if you have something specific in mind

Special guest appearance by Leslie Morris on the keyboards

http://www.reverbnation.com/lesliemorris

 

ALL proceeds go to support

  DEBRA Canada

the only non–profit charitable organization in Canada dedicated to supporting families

of children and adults who are afflicted with Epidermolysis Bullosa.

This is how life feels like to people with EB

  
A bit about Epidermolysis Bullosa...
Epidermolysis Bullosa (or “EB”) is a group of inherited blistering disorders characterized by exceptionally fragile skin and excruciating chronic wounds. People with EB have come to be known in some countries as “butterfly children” because their skin is extraordinarily delicate, like a butterfly’s wings. There is currently NO cure for EB.
                                           

                          

"Just when the caterpillar thought the world was over, it became a butterfly."

A special note to people who have EB:

"You can be a capable, productive member of society... It’s up to you how you handle any prejudice you encounter. You can allow others to make you feel bad, you can laugh it off and overlook their ignorance, or you can attempt to make them better informed.

You are different; you’re unique in facing your particular challenges. Whatever you do, don’t allow yourself to feel like an outcast, or you’ll be additionally burdened by defeat. You must learn to feel comfortable with who you are, and keep it all in perspective. Remember, you’re a person first; it’s secondary that you were born with EB. Embrace life and practice being confident, because attitude really is everything! As W.E. Henley said, "I am the master of my fate, I am the captain of my soul." I know sometimes it’s hard to cope, but seek out others who can help you do it when times are tough..."
 - Gena Brumitt
President, Director of Awareness & Education, DEBRA Canada
Vice Treasurer, DEBRA International
and Regional Envoy, DEBRA International "EB Without Borders" committee
Founder, International Epidermolysis Bullosa Awareness Week, October 25-31

Be determined, see every day as an opportunity for happiness, and love with all your heart.

What is Epidermalysis Bullosa or "EB"

Epidermolysis Bullosa (EB) is a painful genetic skin disorder that causes skin layers as well as body linings to seperate and blister at the slightest touch.

Try to imagine a person with painful wounds similar to burns covering most of his or her body. Unlike burns these wounds never go away. For children, riding a bike, skating, or participating in sports is difficult because normal activities of children causes chronic sores. Wounds may cover up to 75 percent of the body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister preventing sight for days. Chronic anemia reduces energy and growth is retarded. There is little hope for life beyond 30 years. Children with EB are often referred to as Butterfly Children because their skin is as fragile as a butterfly's wings.