Planning Your EB Awareness Campaign

For some, planning a fundraiser is simply an endeavor that’s out of reach – maybe you don’t have the time or energy to plan one or you haven’t been able to recruit volunteers to help you as you had hoped. Even a committee of one – you! – can use this time to spread the word about EB to others, through your own EB awareness campaign. Make it your mission this National EB Patient Awareness Week to use your voice, knowledge and maybe even personal experience to educate others about a disease that they most likely never heard of before.

Here are some tips for helping you do that:

· Reach out to local media. Draft a short news brief about the significance of the last week of October to EB families and explain what epidermolysis bullosa is for readers; then send your article off to community publications. Write up a letter to the editor about the need for EB research dollars and national attention and forward it to local metropolitan newspapers. As for local TV, email a reporter who covers events and profiles in the community and tell him or her about EB and suggest a feature on the subject or a profile of a local family to introduce the topic to viewers.

· Educate those with the job of educating others. Suggest to school administrators that you set up an information table outside the cafeteria or the school book store for one day during National EB Patient Awareness Week – perhaps time it along with a bake sale that week or ask if you could host your own bake sale along with your information booth to raise funds for DebRA. This might be a small enough fundraiser that you could still manage yourself while handing out literature, and best of all, it would give others a reason to stop by your table! Put together flyers and have these and other information sheets about EB available for students, teachers and other staff members at school to take with them. Maybe request that you attend that week’s teacher/staff meeting to speak for five minutes at the beginning of the meeting and leave behind information sheets about EB.

· Spread the word in social circles. If you are normally part of a moms’ exercise group or community or hobby group that meets regularly, ask if you could bring in baked goods and refreshments once during that week and address the group about the subject. Use the opportunity to familiarize attendees with the DebRA of America website or whatever other EB organization you support regularly, and urge the group to take on the nonprofit as their benefiting charity over the holidays.

· Use your social media lines of communication. You’ve seen us do it before on our EB Resource Twitter page. In fact, we’re doing it again this year – details coming in next week’s blog! Why not use your existing accounts and relationships on Facebook, Twitter, MySpace, LinkedIn or other social media sites to educate your friends or followers about EB every day of EB Patient Awareness Week? Let people know early in the week what you’ll be doing so there is full disclosure, and don’t be surprised if you have a few followers who trail off or even disconnect because they may have followed you for completely different interaction or subject matter. But for others with whom you are still growing your relationship, it can be a great way to share your story in an educational, non-threatening away. And best of all, the nature of social media encourages others to … pass it on, paste and forward, SHARE. And that’s exactly what you want them to do!

What are some other ways you could launch your own EB awareness campaign just two weeks from now? It shouldn’t take nearly as much planning or involvement on the part of other parties – merely a forum, perhaps a welcome or invitation to share, and your commitment to be honest, accurate and sincere with your appeal for others to learn more. Expect nothing more, but ask for their attention.

And let us know if you are doing an awareness campaign from your backyard. We’d love to hear what you’re planning!

DebRA of America
EB Resource on Twitter

Related Posts:
Doing Our Part: What Can You Share?
Social Media for EB Storytelling
Blogging Your Story: Five Things You Should Know

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