Thursday, May 1, 2014

EB Awareness Event in SL & Guest Speaker Jodi Champagne

I apologize dear readers for not getting a post done before now.  Like many others in SL, I have been experiencing issues with my viewer.  Though I am still having some issues, I did manage to take a few  photos of some items you will find at the Epidermolysis Bullosa (EB) Awareness Event.  There are activities daily and over 40 businesses at the event!  Each business is donating 50%, or more, of each purchase to Debra of America!  The event will continue until May 5th, so you still have plenty of time to visit!

Today, we are honored to have RL author and photographer, Jodi Champange at the event!  Jodi is the author of Courage Under Wraps and will be speaking today at the event starting at 11:00AM SLT!  This is your chance to meet Jodi, hear about her work, and also learn more about Epidermolysis Bullosa!

Ah yes, I did mention shopping, didn't I?  Shown in the photos below are a few of the exquisite items by KaTink, Corrupted Innocence, Glow Designs, Spellbound Hair, and DaneMarkZ.  These items, and more, can be found at the event!  Believe me, you do not want to miss out on these fantastic exclusives and discounted items!

Event Exclusive from KaTink - Chasing Butterflies (5 Poses and Butterfly Prop)
Event Exclusive from Corrupted Innocence - Wild Butterfly Dress (available in 6 colors)
Event Exclusive from Spellbound Hair - Sunday (Spring color pack)
If you read the title of the event, and you have not heard of Epidermolysis are not alone.  On the Debra of America website, EB is referred to as, "The worse disease you've never heard of."  EB is a genetic connective tissue disorder.  Though there are several forms of EB, each form is similar in that the skin, and other tissue, is extremely fragile.  The smallest amount of friction results in extremely painful tears and blisters.  Those with EB are often referred to as "Butterfly Children" because their skin is as fragile as the wings of a butterfly.

Event Exclusive from Corrupted Innocence - Wild Butterfly Dress (available in 6 colors)
Event Exclusive from Spellbound Hair - Sunday (Spring color pack)
I had never heard of EB until my friend, Cerise Emor, spoke to me about her RL volunteer work with Debra of America (Dystrophic Epidemolysis Bullosa Research Association of America).  While we were talking, she shared with me the heartbreaking story of an 18 month-old child named "Hope" who has EB.  She has grown very close to "Hope" and her family during the time she has known them.  Cerise has told me some about the hospital stays and the procedures "Hope" has had to endure as she is even unable to eat because the friction of just swallowing causes injury.

Discounted Item from Glow Designs - Spring Breeze Frill Dress (available in 8 colors)
Event Exclusive from Spellbound Hair - Sunday (Spring color pack)
Event Exclusive from DaneMarkZ - Summerlovin' Necklace (available in 5 colors)
I have changed the name of the child to "Hope" for the families privacy, and also because even though "Hope" is in unimaginable pain, she still manages to melt your heart with a smile and her laughter is contagious to those around to hear it.

"Hope" is the reason the EB Awareness Event in SL was dreamed into being.  In late March, "Hope" was not doing well and was in the hospital again.  Cerise had visited "Hope" in the hospital and spent the day with her family.  She was in tears as "Hope" was having to endure so much for one so young, and she was feeling frustrated there wasn't more that could be done for her.   While we were talking about "Hope" and the fact so few knew about EB, I mentioned to Cerise we should plan an event in SL to raise awareness of EB and funds for Debra of America.

Event Exclusive from DaneMarkZ - Summerlovin' Necklace (available in 5 colors)
Inspired by "Hope", Cerise and I reached out to Ray Burdeyna, owner of Burdeyna Islands, for assistance with a location for the event.  We were so very grateful Ray donated a half-sim for the event!  Without his generosity, the event couldn't have taken place!  Next, we began reaching out to designers, creators, bloggers, entertainers, and anyone who could help by participating in the event or by donating items.  We were overwhelmed by the willingness of those we contacted to help in any way they could, and by those so generous in donating their time and talents!

I hope you will take a few moments out of your day and visit the EB Awareness Event to hear Jodi Champange speak today, to learn more about Epidermolysis Bullosa, and to donate to Debra of America.  If you would like to donate directly, please visit their website and click the "donate now" button!

Hugs to all!

EB Awareness Event Creator Credits:
Corrupted Innocence @ EB Awareness Event -- Wild Butterfly Dress in blue (Event Exclusive)
DaneMarkZ @ EB Awareness Event -- Summerlovin' Necklace (Event Exclusive)
Glow Designs @ EB Awareness Event -- Spring Breeze Frill Dress (Event Discounted Item)
KaTink @ EB Awareness Event -- Chasing Butterflies Prop and Pose (Event Exclusive)
Spellbound Hair @ EB Awareness Event -- Sunday Spring Color Pack (Event Exclusive)

Other Credits:
Shape:  Anna Shapes @ Designer -- Nara (available until May 3rd)
Skin:  WoW Skins -- Riwen
Nails:  AlterEgo on Marketplace -- Juicy Nails
Shoes:  Redgrave on Marketplace -- Nikki Heels
Pose:  KaTink -- Roxeanne 3 & 8

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