Building an Effective Blog

We’ve offered tips in the past about blogging, because it tends to be one of the more popular and effective tools for connecting members within the EB community. But what are the basic elements or characteristics that contribute to a blog’s success in resonating with visitors? If you are thinking of starting your own EB blog or perhaps re-launching an existing one, here are some important aspects to keep in mind.

  • Blogging tools. We won’t offer our vote on the best blogging tool to use, because there is no such thing. You’ll find people in the EB blogger community using WordPress and still others using Blogger or Blogspot, so it varies. We suggest that you review a variety of EB blogger sites and when you find one in particular laid out a way that feels easy to read and right for you, do your homework. You should be able to tell from the address or at the bottom of the home page which tool was used to create it. But don’t be afraid to reach out directly to the blogger and ask them what they like and don’t like about the tool – its ease of use, flexibility and accessibility. Then begin the self-serve educational process on your own and dig in. You won’t truly understand the tool until it’s in your hands and you’re wielding it!
  • Frequency of posting. When people subscribe to a blog, there is a certain level of expectation – that you will get the same kind of content with the same look and feel on a fairly regular basis. A subscriber may not know exactly what that is at the time but once the first blog update is sent, a set of expectations begins to formulate for future posts. Make certain as you are setting up your blog that you determine what level of posting frequency is going to be realistic for you. Often people set out with an aggressive desired frequency like daily but once they begin blogging, quickly realize that it can be a time-intensive job.
  • Nature of content and tone. Similarly, determine what will be the general nature of your content – are you presenting 'day in the life' bite-sized views and sounds of life with EB to educate people who don’t know about the disease? Or are you using your blog to share caregiving tips with those who know it all too well? And what about tone — are you setting out to provide witty observations to bring some bit of humor to a usually darker, more serious topic or does your tone appeal to followers to take action and encourage more civic or social involvement in national or international EB awareness campaigns?
  • Interaction. For many, blogs can serve as journals to record relevant details or events in their lives. However, for others, they may be viewed as a meeting place for one voice to pose questions or perspectives and welcome others to contribute to the conversation. Most are often a hybrid of the two. How much interaction do you want to inspire at your blog? Keep this in mind as you plan what kind of content you will be posting, lay out the different features at your blog and establish comment settings.

There are so many wonderful EB bloggers and soon we plan on featuring one of the EB community’s better known contributors as part of our ongoing Q&A interview series. So stay tuned for that very soon! In the meantime, congratulations on the making the decision and taking that first step. Don’t forget: never be afraid to ask questions or seek out advice from those who may be blogging already. We can always learn from each other. Good luck!

Mommy Bloggers and the EB Community

Mommy blogger communities have emerged across various parts of the country as a powerful voice and growing sphere of influence, as consumers, as parents and as citizens and neighbors. But in the EB community, these bloggers seem to have truly embraced a very significant role to play: as members of an intricate support system and knowledge base.

For the past several years, I’ve watched the EB community grow as more and more families have become actively involved in raising awareness and research dollars. That has also included witnessing the EB voice of only a handful of parents of children with EB, grow into a much louder one comprised primarily of mothers looking out for not only their children but other families within the community, as well. And even when some of these voices have been momentarily silenced after the deeply personal and devastating loss of a child, many of them have promptly returned to the blogging community to continue speaking out for the community through their blog.

In other blogger communities, moms often focus on finding better solutions – maybe it’s more affordable baby supplies, a better-made garment or a suggestion for a pediatrician, local hair stylist or family-friendly neighborhood restaurant. If you scan some of the more active EB mommy blogs, you’ll see it’s not much different, but perhaps the focus is on wound care supplies, EB-friendly clothing sources and suggestions for flexible locales to take out the whole family and ensure a fun, safe visit for all.

There are so many wonderful mommy bloggers in the EB community, we couldn’t possibly have a favorite but we’ve been touched by the different ways these wonderful moms have transformed into great communicators and leaders, from Patrice Williams to Sara Denslaw to Courtney Tripp Roth, just to name a few.

For those of you that follow specific mommy blogs in the EB community, who have you chosen to follow regularly and why? What was it about their specific blogs that compelled you to return or even interact with the mother behind the blog? And for any of our EB mommy bloggers who may be reading this, we’d love to hear from you, too. Why do you make such a commitment of time and energy to be a participating mommy blogger in the EB community? What do you feel you get back in return for that investment?

To all of the bloggers out there – moms, dads, those diagnosed with EB themselves who wish to share more about their experience, educate or connect with others, I just want to say thank you for all you do to help define EB to the world and bring more attention to its deep impact.

Blogging with Purpose

We’ve talked about blogging before and how powerful it can be as a tool to connect and educate people. In fact, earlier this year, we offered some suggestions for questions you may want to ask yourself before you a launch a new blog. In the past couple of years, we have pleasantly watched the EB blogging community grow rapidly. More and more families and individuals living with EB continue to find the tool immensely useful for linking directly with others who can relate to their daily challenges and support one another through what can often be a confusing and tough road to navigate.

Maybe you’ve already launched your blog and it has served primarily as a daily diary of sorts or perhaps you are still figuring out how you will use it. One of the most important decisions you can make is determining what will be the purpose of your blog.

  • Information
    Are you looking to offer readers a place they can visit to find answers to their questions or hear from someone who understands what their daily challenges are? Some bloggers use their new platform to share links to helpful resources that they have uncovered and want others to know about.
  • Opinion
    Do you hope to save others time and money by avoiding costly consumer mistakes you have made? Are you presenting a sound board to vocalize your views and welcome others to chime in about care issues like EB treatments, research trials and insurance challenges? In the EB community, you will find some bloggers who like to share their reviews about effective (and not so effective) wound care supplies, EB-friendly clothing and household products they come across and their firsthand experiences using them.
  • Connection
    Will you be using the blog to promote other bloggers in the community as much as to feature your own content? With the use of blogrolls, which list as many bloggers as you’d like to share with readers, you can help spread the word about other people your visitors should be following. In this way, your own blog can become a potential bridge to bring members of the EB community together who otherwise may never have crossed paths or been introduced.
  • Inspiration
    Can you use your blog to encourage followers in some way? Whether it’s persevering through what may sometimes feel like insurmountable obstacles or urging followers to carry through with plans to launch their own fundraiser, awareness event or campaign, do you see yourself serving a supportive role with your readers? As a blogger, you can use your blog to inspire a change in attitude and spirit, directly and indirectly, and even motivate others to take action. Maybe you’ll set out to lighten the mood with amusing or inspiring words and pictures, offer upbeat news and ideas to raise spirits, or spur activism in the heart of followers.

What purpose will your blog serve? It’s not an easy question but one that you will want to take the time to answer so your blog best reflects who you are and what you intend for your blog to be in the eyes of your readers.