International EB Awareness Week - 25th -31st October 2010
 

The main objectives of International EB Awareness Week, and the Walk a Mile in My Shoes campaign, are to boost awareness among policy-makers and society at large about EB and its intrinsic impact on the lives of patients and patient families. The week is October 25th – 31st, 2010.  Visit www.mywalkamile.org for more details.

A global initiative, International EB Awareness Week is a time when DebRA organisations from around the globe work together to create more awareness of EB and of Debra organisations and to raise money for this important organisation.

Stay informed - create ACTION

If you'd like to stay involved and informed about what's happening for International EB Awareness Week 2010, you can sign up as a fan of the facebook page for this initiative by cliking here.  Spread the word about EB amongst your facebook friends; get people talking and create some ACTION for a better future for those with EB.

You can also visit the official website for EB Awareness Week, set up by Gena Brumitt Gruschovnik of Debra Canada & Debra International.  Here you can access many tools to help you raise awareness of EB and Debra in your community and with your local government officials.  The Debra organisations around the globe have been working extremely hard to contact policy-makers in their respective countries, with the goal of  obtaining proclamations from policymakers endorsing International EB Awareness Week.

Gena says, “Researchers, doctors, specialists and nurses at international Debra conferences are excited about the outreach work we’re doing to raise EB awareness,” states Gruschovnik. “They believe in what we are doing, and it’s essentially a partnership. When effective treatments are found - or better yet, a cure - we will be in a more favorable position to lobby policy-makers for sponsorship and funding, because they will have heard of EB.
Our job is to introduce them to this disease now, so the efforts of researchers are rewarded. More than anything, they want people with EB to benefit from their labours.”

How You Can Help - Volunteers Needed For This Important Outreach Initiative!

If you want to help with this international EB awareness effort (even one hour a week will help!), please contact Gena Brumitt Gruschovnik (DEBRA Canada’s Director of Awareness & Education) by email: ggruschovnik@debracanada.org or gena@mywalkamile.org.

The work is social outreach - emails, the use of social media, and letter-writing. It would be helpful to have at least one volunteer from every province and territory. It is very easy to request a proclamation from your local and regional policy-makers, and EB Awareness Week is a great time to educate society about EB by talking with the media. Resources are posted for your use on the www.mywalkamile.org website. As proclamations are issued around the world in 2010, they will be posted on the website.

Last but not least, you may also want to consider hosting a 2010 International EB Awareness Week fundraising event to support EB research and patient support programs. Valuable resources are listed at www.mywalkamile.org to help you host an event of your own. Remember – it’s the last week of October every year. Here’s to a successful 2010 campaign and increased EB awareness!!! 

Debra Australia Merchandise

100% of profits from the sale of EB Butterfly Day merchandise are donated to DebRA to for research.

• DebRA Australia 2010 calendar
• DebRA Australia Reusable Shopping Tote Bag
• Butterfly Tattoos - great for kids
• Butterfly Lanyard - useful for work
• Stylish DebRA Pen

To order your merchandise packs, go to the products section, or to make a donation, head to our Donations page