Schedule of Events
October 25-31, 2007

The "Walk a Mile in My Shoes" Relay begins the morning of Thursday, October 25, 2007, with a small group of advocates (including our EB Advocacy Team) taking the ferry to "Liberty Enlightening the World," otherwise known as the Statue of Liberty. Here, there will be a ribbon-cutting ceremony - an unfurled length of gauze cut with medical scissors in acknowledgment of the many, many miles of gauze bandage that has been wrapped around people who were born with EB.

The ferry returns and our EB Advocacy Team and others meet up with the main group for the Kick-off Rally taking place at Battery Park, Gangway 1 and 2, from 10:00 a.m. to 12:00 noon.

Next, those who wish may join the group traveling to the DebRA offices for a reception hosted by Suzanne Cohen. Due to the busy time of day, we will take vehicles on this trek instead of the planned walk, as requested by NYPD. We'll have a police escort, and we will drive slowly so that New Yorkers can see our event banners. If you join us, you may continue home or join us at DebRA for a short visit. This day's journey will lead to another destination after the reception at DebRA of America.

Next stop is Thomas Jefferson University. Here, under the direction of Dr. Jouni Uitto (also our host), the Molecular Diagnostics Laboratory identified a vast number of genetic mutations that underlie the variants of EB. We'll have our final Rally/press conference of the day at Jefferson Alumni Hall.After an overnight in Carlisle, PA, our EB Advocacy Team will continue on to Cincinnati Children's Hospital, for our October 26 Rally, hosted by Dr. Anne Lucky and Lindsey Gregg, Mom to Maxx. This Rally will have fun activities for the kids, and fabulous food! We continue on to St. Louis, where Dr. Susan Bayliss hosts our October 27 Rally, and then we overnight in Kansas City. On October 28, our destination will be the new Denver Children's Hospital, where our hosts are Dr. Stephen Berman, Dr. Gary Bellus, and nurse Judy Smith. More fun activities for the kids, music and fabulous food! A Motorcycle Rally is expected to escort us in the final miles here, and a Walk in the final stretch. On this night, we are also excited to announce the first "Walk a Mile in My Shoes" EB Benefit on Second Life, a 3D virtual world. This particular event will be promoted by DebRA International, so that ALL DebRA member groups throughout the world know that they can participate.Next, we travel on October 29 to Provo, Utah, where KaDee and Brad Troop and Jamie Gibson Hartley are hosting our Rally at the brand new Covey Center for the Arts. We have some wonderful entertainment scheduled here! On October 30, our destination is Reno, Nevada, where Joseph Galata has arranged for a TV studio appearance for our team. As well, he has arranged for a wonderful dinner in our honor.

On October 31 (also Halloween), Lynn Anderson and Dr. Al Lane are our hosts at Stanford Alumni Hall. Bring the kids in costume because it's also a Halloween Party! Pizza and salad will be served.

I thank all of our Rally hosts PROFUSELY for their help in making this week something memorable and very, very special for our EB community on this, our inaugural National Epidermolysis Bullosa Awareness Week! We have had much communication and many changes - we are blessed to have the endorsement of Natalie Merchant and Warner/Rhino Records, Natalie's song "Wonder" as our campaign's theme song, and EB families helping to do fundraising and bring Sponsors on-board. A "Walk a Mile in My Shoes" documentary will be produced by Annette Cormier of London, Ontario, an altruistic soul who will soldier on with her camera and videocamera for the entire week. I've had great support north of the border with dEBra Canada's Sponsorship, and the support of EB families here - even though they know I'm an American!

We may be a SMALL single-interest group (the EB community), but in these closing weeks before our event, it is clear that we are a cohesive one, a corps d'esprit of real beauty who has foundit within ourselves to rise above everything else to honor those we love who have EB, and those we have lost to it. Our positivity is critical to our success. On behalf of myself, DebRA of America, and EB Medical Research Foundation, I thank you ALL for taking part in this venture!



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