45 Days to EB Awareness Week

It’s hard to believe that EB Awareness Week is just around the corner, only 45 days away.

For those of you who are already deep into the planning stages of your fundraisers or awareness events in your community, please reach out to others here in the EB Resource forum or at your preferred EB organization for any guidance or support. Some groups, like DebRA of America for example, have pages on their website devoted to carrying out a fundraiser in their organization’s name, and other groups may offer helpful kits or fundraiser advice. You just have to ask to see what resources may be available to help make your event a success.

As this very relevant nationally designated week approaches, we wanted to take this time to remind you of various ways you can make a difference for EB Awareness Week, whether or not you’re planning or hosting your own event.

  • Many network TV affiliates and metropolitan newspapers are not likely to be familiar with EB Awareness Week. Reach out to local broadcasters and newspapers columnists in the community. Shed light on the subject with people who have a forum to share with others, and you just might inspire them to start talking about it through their own channels.
  • If you have a child or have close family or friends that are enrolled in an area school, consider reaching out to the school to make them aware of this still rarely known disease and what EB Awareness Week is all about, and encourage them to get involved in some way as a school or class project.
  • Spread the word about EB Awareness week to members of the clubs, networking organizations and other groups that you associate with. Many of these will be looking for opportunities to take part in some kind of community project or fundraiser campaign. Put a face to the disease by sharing some of the stories available on blogs like ours or at organization websites including DebRA’s.
  • Reach out to good friends who own area businesses and let them know about EB Awareness Week including restaurateurs, shop owners and service providers, and encourage them to do something on their own to raise funds and lend a hand. For example, you might suggest to a local restaurant owner that they have a particular night where a portion of proceeds benefits one of the EB-focused organizations or if there is an EB family in the vicinity, where those proceeds go directly to them.
  • Sometimes, I’m sure it can feel like you have 101 different social media accounts to worry about but in the case of EB Awareness Week, this is your chance to put whatever ones you have to work. Use all of the different platforms you’re involved with – whether it’s LinkedIn, Pinterest, MySpace or the more prevalent ones such as Google+, Facebook and Twitter – and take that week to introduce facts about EB, statistics, important organizations or studies people should know about. This can be a great time to use social media as a tool that can truly educate and inspire. And it’s already in your hands!

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