Social Media and Support

It has been amazing to see the online EB community grow as much as it has over the past 5+ years. I have watched social media evolve into a means through which we can educate and raise awareness, a feed to interact and communicate and a bridge to minimize distance and connect people. Though EB is still considered a rare disease, our ability to link to one another quickly and on a timely basis about the subject makes the world feel a little less vast. 
It was just over six years ago that we first launched the EB Resource blog as well as our Facebook and Twitter pages. At the time, we set out to reach anyone directly impacted by epidermolysis bullosa to provide a place where they could turn to gather information about important resources available to EB patients and their families. We also hoped to begin growing a support network comprised of those profoundly touched by what they learned about EB, people who wanted to do something because of this awareness.
Across the social media universe, we have seen the power of connection and what it can do in all types of communities — whether it is groups of people joined because of a shared cause or concern, like interests or circumstances or a common mission. We have seen the reach of a community’s commitment to retweet and spread information within our own feeds during EB Resource’s annual tweet-a-thon held each October during EB Awareness Week. But we know there is always more we can do here to help facilitate a supportive environment and avenues for members of the EB community to connect. And that’s where we need your help.
As we continue to build the community in the new year, we hope to include other voices and resources we discover along the way and we want you to reach out to introduce them to us. Also, if there are topics or areas of interest you would like to see covered so we can add more value to the blog or create greater opportunities to interact across our Twitter and Facebook pages, we want to hear those ideas from you. Email me at Help us make 2017 an even better year for connecting for the members of our community. Thank you in advance for helping us to do that.

Tweeting to Support EB Families

Follow along on #ebfund next week for our annual Tweet-a-Thon to raise EB awareness and funds!

We’re excited to once again launch our annual Tweet-a-Thon in honor of the nationally and internationally-recognized EB Awareness Week. This will be our third consecutive year doing the campaign, and we wanted to make certain that members of our online community were aware in advance of what to expect and how to get involved.

Each year, we like to take this important week designed to raise the general public’s awareness of EB to not only educate but also to give everyone a chance to give back in a very easy and fun way. For 24 hours straight, we will be tweeting every hour about EB in the hopes that our followers will re-tweet our updates to their own group of followers. In this way, we can all work together to reach as great a number of people as possible, and by the end of that 24 hours, we will know that there are more people familiar with epidermolysis bullosa than when the day started.

But the Tweet-a-thon has a very real reward element attached, too. For every tweet and retweet during that 24 hours using our designated hashtag #ebfund, Hollister Wound Care will donate a dollar — up to $2,500 — to DebRA of America in support of its tremendous work with individuals and families facing EB each day.

So think about it – if you re-tweeted at least 20 of our two-dozen messages to your own Twitter followers and another 49 of our Twitter followers did the very same thing, that would be $1,000 right there alone going to DebRA! Just imagine if you can persuade some of your own followers to hop on the campaign with us and forward to their group of followers.

Here is what you need to know to help:

  • Yes, you need to be on Twitter to participate. It's free to join. Open your account today here.
  • Follow us @EBResource and consider bookmarking our Twitter page. You may even want to put a little reminder chime on your phone for the start date and time of the campaign — or maybe even every hour on the hour to remind you to visit our page often!
  • Searching for the hashtag #ebfund will also call up the posts.
  • On Thursday, Oct. 25 at 8 a.m. EDT, we will tweet once every hour for 24 hours straight as we lay out the background story of EB, a Twitter campaign that we’re calling, “EB: A Day in the Life.”
  • Anytime between that Thursday morning and the 7 a.m. hour when we’ll wrap up the campaign on Friday, Oct. 26, you can help us by re-tweeting (RT) our updates to your followers or sending your own tweets to them. Please make sure to use the designated hashtag #ebfund when you do.

Each year, we enjoy tackling the not-so-easy task of telling a story about EB to those unfamiliar with it, because we know that you’ll be there with us every step of the way. I hope we can count on your support again this year and that of your friends with whom you share this blog link.

And thanks so much in advance for all of your help!