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Current Events

July 30th, 2015

Our currently active events include events that have yet to begin, events that are currently in progress, and events that are still accepting participation.

  • Valentines for Leah

    One of our beloved EB Angels’ birthdays is approaching, and we would like to honor her memory with Valentines! Leah’s birthday is February 10th, and was born in 2009. Let us support Leah’s family, her parents Meghann and Jeff, and her little sister Tabby on this day.

    What to do?
    Create a Valentine for Leah with a special thought, prayer, kind words, picture, anything!! Make it out of paper, purchase one from the store, draw it on your computer, write it in the sand/snow, the possibilities are endless.

    To read more about this precious angel, visit Leah’s Legacy

  • EB Awareness Bracelet Fundraiser

    Show your support with a custom made literal conversation-starter! Get your family, friends, coworkers, and everyday passersby talking when they see your EB Awarenes Bracelet, complete with full name of “Epidermolysis Bullosa.” More information and images can be found at our Facebook Community Page:

    Thank you to everyone who has already purchased their bracelets, and an extra special thank you to everyone who donated above and beyond the $3 price per bracelet. We are so grateful for your support to make this fundraiser such a big success!

    Click on the link to “Join This Event” to send an email for a bracelet request. Be sure to mention the number of bracelets you wish to purchase and your location. Any bracelets shipped inside of the US will be shipped for free. Unfortunately at this time we cannot provide free shipping outside of the United States. We can, however, offer you an estimate for how much it would cost for shipping if requested.

    A special thanks to Crestmark Bank for providing free shipping within the United States.

  • “I Refuse” Campaign

    “I Refuse” to stand by and watch another child suffer from EB when I know I can do something to make a difference. This is the motto of the I Refuse Campaign. Dedicated to raising awareness, Christie Zink has founded the campaign to spread the word and motivate others to do the same and raise donations to help find a cure for “the worst disease you never heard of.” Christie asks, “This year I ask each of you to refuse to wait for the change and instead be a part of the change.”

    The Facebook event page lists updates and details about the forthcoming event, which involves custom packages containing marketing materials such as t-shirts and business cards. A date will be set where everyone, with their marketing materials, will go out and spread awareness. Everyone is welcome and encouraged to participate.

  • Tripp’s Candlelight Vigil

    On Sunday, January 15th, 2012 at 8:00pm, nearly 1,000 candles were lit around the world in Tripp’s honor and memory. The outpouring of love and heartache was overwhelmingly inspiring, to see how many people were touched by Tripp’s life. From every corner of the United States to countries like Australia and England, people came together to share a kind word, a memory, and a photo of their candle shining. It was an homage, for the Little Light we have lost here on Earth, but has brightened the Heavens so incredibly. The success was made possible by so many caring individuals coming together, united by their love for this amazing little Butterfly boy.

    Tripp earned his angel wings on Saturday, January 12th, 2012. He was exactly 2 years and 8 months old.

    The event took place on Facebook and will run until May 15th, 2012. Photos of vigil candles were posted, and submissions are still accepted while the event stays open. All photo submissions were compiled into an album on the EBawareness Facebook official page.

Past Events

Our past events may have completed, but can still serve as inspiration for future events!