It is called Epidermolysis Bullosa or EB. Children that are sufferening from EB are often referred to as the Butterfly Children. Please read the following note from another dear friend of mine, Persephone Milk.
EB Awareness Week Benefit Concert Slurl
Hello my dear friend :)
It's that time of year again. The last week of October is National Epidermolysis Bullosa Awareness week. To help children suffering from EB, my dear friend Caeleigh Lamington and I are having an event to raise awareness. Our goal is to have some fun, share a little bit about EB, and give you some ways to learn more or make a donation.
We have a very special evening of music planned for you. Five wonderful live performers are donating their time to this cause, and Trinity and Nala will bring their weekly show to my island. In all we have eight hours of music and fun planned for you:
2nd Annual EB Awareness Week Benefit Concert
Saturday, October 25th
04:00-05:00 PM SLT - Frogg Marlowe and Jaycatt Nico
05:00-06:00 PM SLT - Lyndon Heart
06:00-07:00 PM SLT - Tone Uriza
07:00-08:00 PM SLT - Kyle Beltran
08:00-12:00 PM SLT - The Trinala Show
100% of the proceeds from all sales made at Musical Alchemy and Persenickety during the events will be paid directly to two EB charities (see below). So if you have waited to buy a grand piano until now, this event is a wonderful time to make a purchase and help some hurting kids and their families.
I hope you can join us!
Yours truly,
Persephone Milk
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About Epidermolysis Bullosa (EB)
If you are like I was last year about this time, you don't know anything about Epidermolysis Bullosa. You have never heard about it, and you certainly can't pronounce it. When you hear that EB is a genetic skin disorder, that causes severe blistering in babies and small children, that these blisters - inside and outside of their body - will eventually lead to a painful and heartbreaking death - well, your your first thought may be to close your eyes.
This is perfectly natural. I closed my eyes too.
I know how painful this disease is, because a very dear friend of mine has it. Oh she is quick to remind me that she does not have the most severe form. But this says more about her heart for the small children she knows suffer a little more than she does, than it does about her own condition. She has seen first-hand, the incredible suffering of these children, and at the same time, seen the hope in their eyes that a cure is only around the corner - if only they can save the energy and heart to survive long enough.
What is EB? Well, as you know, your skin is composed of layers. In a healthy person, the dermis, and the epidermis have strong anchors that hold them together so your skin acts as a single organ to protect you. In a person with EB, those anchors are missing. So the layers of the skin are free to slide and move against one another. This motion causes very severe blistering.
These blisters are not like the blisters you and I get. A child with severe EB can have blisters covering as much as 75% of their entire body - the pain is as excruciating as second and third degree burns and these blisters do not heal. A child with EB cannot play like other children. Some cannot eat solid foods. Parents of children with EB spent hours each morning changing their bandages in a desperate attempt to comfort and preserve their children.
You can learn more about EB at these sites: EB Kids and The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)
If you only have a moment, you may want to watch this video. In just a few minutes you will learn a lot about EB:
EB Kids Video
Thank you for reading this far into the notecard. :)
Persephone
EB Relay Official Website
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All money from donations and sales collected during this event will go to the following two 501(c)3 charities, dedicated to supporting those with EB:
EB Medical Research Foundation (EBMRF):
Established in 1991. Donations are dedicated solely to medical research into the causes, treatments and cure for EB
The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA):
DebRA of America, founded in 1979. Donations are used to provide information and support to people with EB and their families, and toward medical research for new treatments and a cure
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Thank you for reading! I hope that everyone will learn about this disease and if possible donate to the cause. I would also like to thank my friend Caeleigh for getting this benefit started and for Persephone for doing so much to help.
I am merely a messenger - Zoe
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