Your Role in EB Awareness Week

 

The last week of October marks EB Awareness Week. For those who are unfamiliar with it, this special campaign was launched globally in 2007 and is now recognized by 112 countries across the world. Each year during the week of October 25-31, organizations and individuals across the world hold EB awareness events and fundraisers to not only build more awareness for epidermolysis bullosa but also garner greater media attention and involvement at all levels – in the business, social and legislative spheres.

 

For those directly impacted by the disease or with friends and family facing EB, it can be an ideal opportunity to host an event or get behind an established campaign. But what if you are neither and have only recently learned about EB and its devastating effects on those afflicted — what can you do during EB Awareness Week 2017?

 

Here are just a few ideas.

 

  • Check out the event calendars at various EB-focused organizations, such as debra of America, the EB Research Partnership and EBMRF, to name a few. See what upcoming campaigns are lined up during EB Awareness Week and figure out how you can best support organization- or supporter-led events in your community or online
     
  • Use avenues via your existing channels to raise research dollars or host your own event during EB Awareness Week. Many of us network informally, in the neighborhoods, community sports and school groups, and quite a few of us in the business sector, may do so for our services and companies. Why not look to any of our existing involvement as a channel to share and educate. Propose a campaign or small event held during the week or later in the year. Raise funds that could support a local family affected by EB or contribute to an organization with programs in place to support EB families across the country. Prove that there truly is power in numbers.
     
  • Encourage your children to get involved and learn more about EB. There is never a better opportunity than an awareness week for an important cause to teach our kids lessons in compassion and philanthropy. Demonstrate firsthand to your children the value of caring for others beyond ourselves and making a difference in the community.
     
  • Reach out to local media beforehand to make them aware of EB Awareness Week and if you know of anyone in your community directly affected by EB, encourage them to share their EB story with area newspapers and TV news affiliates.
     
  • Finally, here is one thing you can do straight from your phone or computer. Help EB Resource spread the word during our Annual 24 hour EB Tweet-a-thon that kicks off at 10 a.m. EDT Wednesday, Oct. 25 and runs through 9 a.m. Thursday, Oct. 26. We will be posting hourly on Twitter for 24 hours straight in recognition of the first day of EB Awareness Week. This year’s theme is 24 Reasons to Take Part in EB Awareness Week. You can help us reach even more people with your RTs. Share our posts with your own followers on Twitter and educate them about epidermolysis bullosa, too. Add the hashtag #RT4EB17 and help us raise awareness and compassion to learn more about EB as we set out to grow our community of support for EB families.

 

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