EB Awareness Week Has Arrived

EB Awareness Week is here, and we’ve been sharing various ways for people to make a difference for EB families this month, including tips for planning EB fundraisers and awareness campaigns. And for the past 24 hours on Twitter, we offered followers 20 different actions people can take to support EB families or fundraising efforts. To those of you who sent tweets and RTs of our hourly updates to help us raise dollars for DebRA, a great big thank you!

We wanted to mention a few awareness campaigns and fundraisers that we’ve just learned about and which are taking place during this special annual week. If you’re able to attend or support in some way, we encourage you to learn more.

If you know of any other EB events taking place this week, please leave a comment here or on our Facebook page so the rest of the community can learn about it.

  • Action for Jackson 2011
    Support Jackson Gabriel Silver Foundation for its second annual fundraiser event on Wednesday, October 26, at 6:30 p.m. at Doubles, a private club at the Sherry-Netherland Hotel, 781 Fifth Avenue in New York City. The event will include an open bar, appetizers and an auction. Tickets cost $150 each with proceeds raised going toward EB research at Stanford University and the University of Minnesota. To request being added to the mailing list, email Jamie Silver at jsilver@jgsf.org.

· Refuse to Settle for Anything Less Than Butterflies Movement
Alexis Mae Sharp has launched a unique Facebook campaign to be held all day Friday, October 28. According to her page, here is how this pass-it-on event works: “the idea is for those of you who know about the condition to draw a butterfly on your arm, hand or bandages. When someone asks you about the butterfly throughout the day, tell them a little about the condition and then draw a butterfly on them as well. Then that person does the same when someone asks them about their butterfly and so on.” For more information, check out the event’s Facebook page by clicking here.

· Savana’s Annual Bake Sale for EB
The Wagner family of Douglassville, PA, are hosting their fifth annual bake sale to raise money for DebRA of America, taking place Saturday, October 29, from 9 a.m. to 1 p.m. at 109 Grays Run Lane. The event celebrates 7-year-old EB patient Savana Wagner and will include free face painting for the kids and opportunities for raffle prizes. For event details, visit the event’s Facebook page here.

· Butterfly Wishes for Ellie EB Awareness Walk
The Tavani family holds this annual EB event inspired by five-year-old daughter Ellie to be held Saturday, October 29, at 9 a.m., at Atlanta’s Chastain Park. Participants can register between 8 and 9 a.m. near the tennis courts with donations encouraged but not required to take part in the EB Walk to raise awareness. For the latest information about the event, visit the Butterfly Wishes for Ellie website.

· Annual EB Awareness Walk
Sign up to take part at this annual New Baden, IL, event being held at New Baden City Park on Saturday, October 29, from 3 to 6 p.m. to help spread awareness about EB and raise funds for DebRA. Lace up your sneakers, and check out the event’s Facebook page by clicking here.


Jackson Gabriel Silver Foundation

DebRA of America

Butterfly Wishes for Ellie

Related Posts:

Gearing Up for Your EB Fundraiser

Doing Our Part: What Can You Share?

100 Links for EB Families

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