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What is Walk a Mile in My Shoes?

Walk a Mile in My Shoes 2008 is a grassroots campaign in recognition of National Epidermolysis Bullosa Awareness Week. This special week was created and formalized by Congress and the Senate in the U.S. in 2006, in tribute to people diagnosed with Epidermolysis Bullosa (EB) and to increase awareness about this rare genetic disease. Please see the Legislation page on this site for further information about the Bills.

This campaign’s primary element is a simple one-mile walkathon, taking place anyplace in America, Canada and Mexico.  YOU can organize this with your family, your club, your church or synagogue, your place of business; YOU can hold it at a local high school track, in a park, or in a shopping mall!  YOU and I – we are the advocates for people with EB.  It is up to us!  We recommend that you go out and talk to people, use the soon-to-be-available campaign tools, create awareness for our nonprofit charities, and help the people with EB who need them.

In addition to awareness, our goal with Walk a Mile in My Shoes is to raise funds for research and family programs, for the following organizations:

1. Dystrophic Epidermolysis Bullosa Research Association of America – www.debra.org
2. Epidermolysis Bullosa Medical Research Foundation – www.ebkids.org
3. Dystrophic Epidermolysis Bullosa Research Association of Canada – www.debracanada.org
4. Dystrophic Epidermolysis Bullosa Research Association of Mexico – www.debra.org.mx

Walkathon organizers may choose to participate for the awareness alone, or they can fundraise.  You are encouraged to do so, and to forward the resulting donations directly to the above organizations – your choice, of course!  

Please see the Walkathon How-To for suggestions on how to organize such an event.  For extra encouragement, a slideshow will soon be available here for you to view, from a one-mile walkathon that took place last year!

We invite you to send information about YOUR Walk a Mile in My Shoes event to this website ahead of time, so people in our community will know where to participate; to send information about the success of your event to us, so that we can share it; and to send us YouTube-size videos, as this year the website is capable of showing them, and you can just imagine how much the people in our community and others would like to see our successes!  Feel free to email me at gena@ebrelay.org, if you have any questions – however, if you can wait another two weeks, a form will be available that you can send from this website.

Yes, you can do other kinds of fundraisers.  Yes, if you do not want to raise funds for these organizations, you are still encouraged to do something.  If you are doing a Walk a Mile in My Shoes event and using Walk a Mile in My Shoes tools and resources, all we ask is that you fully participate by sharing information.  If you are raising funds for your own family foundation, that’s fine, because you are creating EB awareness – we only ask that you clarify this information, so that others are fully informed about where donations are going.  We think that’s fair, and we hope you do, too.

We plan to hold another Second Life EB Benefit, which was very successful last year.  If you’re interested in that, go to www.secondlife.com, sign up, and learn your way around – we’ll provide more information about that event at a later date. 

We encourage you to send any potential website sponsors our way, who might want their logos to be seen on the Walk a Mile in My Shoes site.  Through these sponsorships, and local fundraisers held in London, Ontario, this website will be sustained this year, and in the future.  We’ll also strive to bring you additional tools and resources with these administrative funds.  The website will also begin to serve as a news and information outlet year-‘round. 

Walk a Mile in My Shoes 2007, which took place in our inaugural year, included a kick-off component wherein a group of EB advocates drove across America from coast to coast – from Battery Park, New York, to Stanford, California.  Rallies were held in venues nationwide.  The upside of this is that it was a great way to start this campaign – but the downside was that we couldn’t possibly be everywhere!  A documentary of this week is underway, and photos will be posted as part of this website’s reconstruction.  You can still order special event gear that will only be available for another three months at www.cafepress.com/ebrelay.  NEW event gear will be available for the 2008 campaign in August – please watch the website for further information. 

This campaign and all of my efforts that led to it are in memory of my Mom, Lillian Ann “Pat” (Brumitt) Barbrey, who lived with and died from Recessive Dystrophic Epidermolysis Bullosa, Hallopeau Siemens subtype, and in memory of ALL of the loved ones we have lost to the consequences of this dreadful disease known as EB.  Your lives were a blessing to us!  Everything I am, I owe to my Mother, and she would want my life to stand for something.  More than anything, she wanted this disease to be history – especially when she thought of the children!

This campaign is also very much in honor of everyone living with EB now, and to those who will be born into this world.  Whether it's Simplex or Junctional or Dystrophic, each day's journey can be a serious challenge.  We especially honor those of you with the most severe forms of EB, who must fight to live each day.  We can't afford to stop working until there is a cure.

We can pray… and we do pray with all our hearts… we can hope for miracles in cord blood stem cell transplants, and gene therapies and new, better treatments… and we do hope fervently… but we can also take action ourselves, and do everything we can for those we love and others with EB, until that time comes. 

 

Gena Brumitt Gruschovnik
"Walk a Mile in My Shoes" Founder, Event Organizer