National EB Awareness Week October 25-31, 2009

Here you can find local events going on during National EB Awareness Week

Walk A Mile in My Shoes EB Awareness Walk

Butterfly wishes for Ellie's 1st Annual EB Awareness Walk

Date: Saturday, October 24 Location: New Baden Town Park (New Baden, IL) Time: 2pm Attendees can take part in the EB Awareness Walk and stay at the park for a full afternoon of family activities to follow from 3-10pm at the New Baden Annual Chili Cook-off. For additional information, go to the event site where you can also download pledge sheets to raise money for DebRA or contact walk organizer Jennifer McCaughtry directly at (618) 588-5053.

Date: Sunday, October 25 Time: 1:30pm Location: Chastain Park (Atlanta, GA) Supporters can sign up for the debut of this EB awareness walk inspired by 3-year-old Ellie Tavani and organized by parents Andrew and Shawn Tavani to raise awareness and funds for DebRA. To get involved or lend your support, contact Shawn at srtavani@yahoo.com or visit Ellie's Web Site for more information and to sign up to walk!

Events at the University of Miami

This year One in a Million at the University of Miami will be hosting Epidermolysis Bullosa week! This goal of this fun filled week is to raise funds for Epidermolysis Bullosa and to promote awareness for rare genetic diseases. Our events are open to the public, people with Epidermolysis Bullosa and Students. Monday October 26, 2009 What: Epidermolysis Bullosa Forum : Come learn about Epidermolysis Bullosa and about the treatments of Epidermolysis Bullosa from guest speakers Refreshments will be served . Time: 8pm Location: University of Miami Leaning center Tuesday October 27, 2009 What: Epidermolysis Bullosa Banquet . Come enjoy a free semiformal dinner with a guest speaker Time: 8pm Location:University of Miami University Center Ballrooms Wednesday October 28, 2009 What: Walk for Epidermolysis Bullosa . Walk for Epidermolysis Bullosa will be a walk around the University of Miami campus. followed by evening breakfast Time: 8pm Location: Stanford Cicle Thursday October 29, 2009 What: Halloween Party : Come dressed up in your best Halloween costume for a chance to win the costume contest and be ready to party! Time: 9pm Friday October 30, 2009 What: Closing ceremonies Time: 12PM we will be releasing butterflies and having a short ceremony           3PM we will be having an ice cream social If you have any questions or would like to RSVP please email Oneinamillionum@gmail.com If you need anything, or like more information you can call em direct at 786 487 9984 or send and email to a.merzier@umiami.edu

Wings for Layla: Walking for EB Sunday, October 25, 2009 Sheboygan North High School    Field House and Commons Wings for Layla is a fundraiser for Epidermolysis Bullosa that includes a 1 mile walk, lunch, kid activities, silent auction and raffle items.  This site will provide you with information and updates as we approach the event.

EB Event: Bingo for Evan What: Longaberger Bingo for Evan who has Junctional Epidermolysis Bullosa When: Sunday November 1, 2009 Place: Covington Moose Lodge 414 Moose Park Rd Covington, VA 24426 (540) 962-1042 www.loom.org Time: 2:00pm; Door opens at 1:00 20 games with lots of door prizes food available This fundraiser is being done to help defray medical cost relating his disease

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