The members of our EB Resource Facebook community are always offering valuable insight into the lives of those personally facing epidermolysis bullosa or caring for someone who is. Recently, we listened in to hear what members are talking about most and are sharing some of the highlights from the community, in case you missed them.

A lot of information gets communicated every day on Facebook and it’s very easy for helpful suggestions or supporting words to slip by without your knowledge. We want to encourage you to stop by our Facebook page on a regular basis and let your voice be heard within the community on those subjects, popping by with a question or commenting about whatever you feel most passionate.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

• We always like to pose questions to our community members to get their perspective on a variety of topics. In February, we asked EB Bloggers what personal benefits they’ve gained by being a regular blogger. Derra Nicole Sabo shared that for her, the benefits are two-fold: “Being able to not only help others, but to connect with other EBers.” If you’re an EB blogger, how would you answer that question? It’s not too late to share your thoughts here. We appreciate what EB bloggers do to encourage interaction among the EB community and spread the word outside of our immediate circle of those directly impacted. By being a loud, steady voice online that keeps conversation about EB flowing, you provide an invaluable service that can indirectly support us all.
   
• Earlier this year, we featured a two-part Q&A with Jennifer Gorzelany, a consultant to Shire (formerly Lotus Tissue Repair) who answered questions about the EBCare Registry. In late January, one member of the community, Sue Altinkeser, commented that there may be confusion among community members about who should actually take part in registering their family’s data: “People are thinking if they are not dystrophic then it’s nothing to do with them…it may be easier to re-word the registry so all are comfortable in adding their data.” In response to the concern she expressed, we reached out to Lotus and tried to clarify for members what the group’s expressed mission is. EB Resource commented: “The goal of the EBCare Patient Registry is to help all individuals with EB. It is important that the registry collects information from people with all forms of EB, so that as much data about EB is available to qualified researchers as possible. Lotus Tissue Repair is currently working on a treatment for DEB. In the future, however, Lotus Tissue Repair and other companies or researchers may use the information in the registry to study other forms of EB, hopefully leading to improvements in care and the development of new treatments. Every EB patient can help with this effort by joining!”
   
• Some members have found Facebook to be a helpful site to reach out for information or share news about an upcoming campaign or event. Rochi Orbegoso Pea introduced herself and daughter Raquel in November 2012 and their plans to launch an EB awareness campaign at her daughter’s school. Rochi was seeking a speaker at the time for an upcoming event, and we offered to send information on some prospective speakers in her area. Aaron Mavro let members know about a short film competition and his video entry focused on a talented young painter named Kate who has EB and serves as an ambassador for DebRA. Aaron shared the link so members could watch online and vote. Are there any upcoming events, campaigns or efforts you can share with the community and to which members can lend their support and encouragement in some way?
   
• Members of our community let their voices be heard in other ways on our Facebook page by letting us know what stories touch them most. We are always fascinated to see which stories receive the most “likes.” For example, some of you were pleased to learn about a southern Indiana high school who found a way to turn a much-anticipated conference game into an opportunity to educate audience members about EB. Others of you were inspired to “like” a story about 11-year-old Molly Gibbons whose fearlessness and boisterous personality are bigger than her petite frame. We wanted to make sure that we gave everyone advance notice of Rare Disease Day, held February 28, by sending out a reminder two weeks earlier in an update. Several of you indicated that you appreciated the early notice with a “like.” And when we featured part one of a special virtual conversation with EB advocate Jamie Silver of Jackson Gabriel Silver Foundation, you not only told us you liked it: you shared it with your other Facebook friends and we always love to see that!

We love hearing from you…however you choose to speak up in the EB Resource community. So join in the conversation and let your voice be heard, because we welcome it!

Our year is winding to a close, and we’ve had an opportunity to blog about a wide variety of topics throughout the year. We also have had a chance to introduce our community to some special people who were kind enough to share their EB story and what they are doing to make a difference to expand awareness, raise funding for research and improved treatments, connect people in the EB community to one another — or in some cases, all three!

We know we can get busy and spend time away from our favorite blogs and Facebook pages, so we wanted to take this time to share some links to our favorite blogs we presented throughout the whole year. Think of it as a second chance, in case you missed the update the first time around. And if you did read it and enjoyed what you saw, consider sharing it with a friend or even re-reading.

• A Look at the 2012 DebRA International Congress (Oct. 2, 2012)
• Reflections on PCC 2012 (Sept. 4, 2012)
• Journaling: Should It Have a Place in Your Life? (Aug. 14, 2012)
• Support Resources for Caregivers (June 19, 2012)
• Travel Tips for Families (June 12, 2012)
• Blogging: Inspiration and Education (April 24, 2012)
• Strategies for Tackling Anxiety and Fear (March 13, 2012)
• Deciphering Dressings (Feb. 21, 2012)
• Community Contributions (Jan. 31, 2012)
• Overcoming the Challenges of EB Event Planning (Jan. 21, 2012)
• Ideas for an Extra-Special Birthday (Jan. 10, 2012)

And thank you to the following people who allowed us to share their own EB story or special connection to the EB community through their organizations. The links to these two-part conversations have been included, as well.

• Stevie Hislop (Part I and Part II)
• Laurie Sterner of The Butterfly Fund (Part I and Part II)
• Christie Zink of This Little Light (Part I and Part II)
• Kristina Wyatt of EBAwareness.com (Part I and Part II)
• Jamie Silver of Jackson Gabriel Silver Foundation (Part I and Part II)

We’re excited about a new year ahead – new things to learn and share, new topics to cover and new conversations to hold with other valuable voices in the EB community. We always welcome ideas for future blog topics, so if you have any you’d like to suggest for 2013, please email leslie.rader@hollisterwoundcare.com. We love hearing from you!

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.

We always learn so much from the members of the EB Resource Facebook community. Recently, we listened in to hear what folks were saying and wanted to share some highlights. And if you haven’t had an opportunity to visit lately, we invite you to do so. It’s a strong, smart and caring group of people who only want to help educate and support one another. We hope you’ll stop in and say hello.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

• Recently, we encouraged members of the community to reach out to us if they would like to tell their own EB story. We found out that one member Derra Nicole Sabo had already taken a very big step to do just that. “I have written a book with my family about what it’s like living with EB. It’s called EB…Some Call It Epidermolysis Bullosa, I Call It Extraordinarily Beautiful,” she writes. Thanks for sharing, Derra!
   
• In April, we asked members what they felt was the most misunderstood thing about living with EB and received a lot of feedback. A few members especially chimed in agreement with member Elizabeth Schwartz. “It’s no big deal, they’ll grow out of it, a change in diet would help or a new lotion. I mostly hate when people, especially family, don’t acknowledge the difficulty or special needs my kids have,” she says. Jessica Tilldal agrees and notes, “People try to be nice by saying ‘hopefully it’ll get better when she grows up’ when in fact it might be quite the opposite…frustrating!” How would you answer that question? Feel free to share your own thoughts.
   
• We also wanted to pass along to others some recommendations for EB-friendly clothing brands worth a peek online or in person, and as usual, the community didn’t disappoint with helpful suggestions. Jamie Grossman Silver shared that she had made a recent find: “I just discovered a brand called City Threads. Incredibly soft and seams are very gentle.” Josie Tripp offered her own suggestion – “Carters and kicky pants” – and Teri Bienvenu noted some places that have worked for her family: “Gap and Old Navy fleece have always worked for us. Target and A Children’s Place have tag-free cotton shirts and we do crocs for shoes.” Kathryn Foster recommended “New Balance Shoes. They come in extra wide widths to accommodate bandages” as well as Hanes tag-less boxer briefs. If you missed our original question posed, do you have any suggestions to offer?
   
• So many of you told us how much you enjoyed the recent Q&A with the charming Stevie Hislop in a two-part blog as she shared honest and open insight as a young adult living with EB. We’re happy to share that we’ll be featuring another wonderful Q&A with a pivotal person in the community who’s done much to support our families, so look for that next week. And when we did reach out and ask you for suggestions of future people to profile, you shared your suggestions and we took notice and hope to feature more EB advocates and supporters in future blogs. So stay tuned for next week and in the months to come.
   
• We also welcome it when members want to share news about an upcoming campaign or fundraiser. For example, in April, Jeanne Appleton announced to our community that the Scott Ward Schofield Memorial Fund was holding a Facebook Awareness Day online event for the charity on May 18. Similarly, Amy Tunmire Wehr shared news of an online fundraiser for Save Jax that ran April 4-27 to benefit young Jackson Baldwin of Youngstown, NY. We like to think of our community as a powerful, loving circle of friends, and what do you do in the company of friends? You share, you encourage and you support. If you have an announcement about an upcoming event that all of us in the EB Resource community can get behind and spread the word about in our own circles, please let us know on Facebook or email me directly at leslie.rader@hollisterwoundcare.com.

It’s been amazing to see how much the blogging community has grown among EB families, caregivers and patient advocates in just a few years. We’ve certainly been big cheerleaders here encouraging people to share their story, however they feel most comfortable telling it. For some, it’s writing songs or poetry; for others, reaching out to the media or lobbying elected officials. Some very creative people have found ways to use video, photography, art and jewelry-making to tell their story. But for bloggers, it is an ongoing commitment they make to share a very real, honest, sometimes painful look at life with EB from day to day. Making the decision to chronicle our lives through blogs should not be a decision taken lightly.

If you have been considering a launch of your own blog, it’s wise to ask yourself a few questions for consideration before you do.

Why are you launching a blog? It’s important to really understand your intention and reasons behind writing a blog, because you are making a significant time and energy commitment, both physically and emotionally. Once you begin making connections and starting a conversation with others, if you’re not fully vested in the reasons for doing the blog, you may find yourself quitting or contributing sporadically. For others who have now invested in learning about you and your story and started a dialogue with you, this can be disheartening for them, as well, if suddenly you are no longer an accessible voice.

What do you want the tone of your blog to be? The serious nature of EB does not mean that if you are a witty person, you’re restricted from being yourself. In fact, sometimes reading someone else’s funny perspective on a serious subject for which both can relate can actually be a real stress relief. Some bloggers choose to vary the tone to match what is going on presently in their lives. What is most important to remember is that you set the tone early on in your blog, so keep that in mind as you share with others. The more open and descriptive you are with your language, the more candid you relay personal incidents, the more you open the door for others to be just as candid and descriptive in their comments and feedback.

Who are you writing to (or writing for)? You may be simply writing to share your story for others going through similar circumstances, for personal stress relief to anyone willing to “listen,” or maybe specifically to educate those who don’t know a thing about EB. At some point, you may find yourself writing to all of these audiences at the same time as people share links with their friends, some of whom are familiar with EB, and with others, many who probably have never heard of it.

How much are you choosing to share? Again, this is a decision you really must make when you first undertake something as personal as a blog. Are there particular subjects off limits with regard to living with EB? Maybe there are specific people whom you feel you must protect and leave out of the story – by your choice or at their request. Set your parameters and stick to them from the start. It’s true that blogs can evolve as their purpose and following expands, and you may wish to reshape the nature of what it is you talk about or how openly you talk about these other topics, but let that happen naturally.

What do you hope to achieve with your blog? What is your core goal for the reader? Inspiration? Education? Motivation to act in some way? It’s helpful to determine if you are aiming to provide a sense of support and community, maybe more so than you may have experienced when your family was first educated about EB, for instance. There are definitely many more online resources today for communicating with others than there were five years ago, for example. There are forums like EB Friends and great focused nonprofits like DebRA, EBMRF, the Butterfly Fund, PUCK Fund, the Jackson Gabriel Silver Foundation, and others focused on supporting and connecting EB families to help them meet the unique challenges they face every day. Will your blog be a place to bring others to these groups to support their mission, or will you be painting a candid picture of life with EB so that people learn about it but  take action as they feel compelled to on their own?

When is the last time you chimed in when a question was posed in the EB Resource forum on Facebook? Online conversations can be a great way to share information and learn from one another. And we’re always fascinated to see what subjects really get people talking. Here are just a few sound bites overheard in the community recently.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

We frequently look for interesting stories to share with members and sometimes we discover just how much they resonate with them.

• Last month, when we featured an article link about a woman who recently received a computer to use social media for connecting with others, it inspired Laurie Sterner: “What a GREAT article! Not only will Lisa finally meet people she should have known for years, but can you imagine the help and inspiration she will be to others? This is awesome!”
   
• Another link to a video by a young woman using YouTube to educate others about EB struck a chord with Kathy Tshudy: “I know what she is going through. I have a granddaughter with EB. It is not fun to live with. She is only 11 years old. She is the strongest kid I know to deal with the pain every day of her life.”
   
• Another story about a Kansas family facing a tough relocation decision really hit home for Deirdre Renee Cummins: “I have a daughter with EB and live in Kansas City, MO. The doctors who specialize in EB at Children’s Mercy are just wonderful. I hope this family is able to move and be closer. There is only a small number of people in our community with EB, but they definitely reach out and are so welcoming. Having support not only from the community but also people from around the globe has been absolutely wonderful for me, and I pray this family gets a chance to experience it.”
   

Sometimes we pose questions to the community to get members’ input on particular topics, and that feedback is invaluable.

• In January, we asked members if they had any advice they could offer to others putting together their first EB fundraiser. Many members chimed in including Jamie Grossman Silver: “Designate the money raised to focus on funding research and let the donors know exactly what their donation is going towards.” Heidi Gabriela shared that a recent butterfly tattoo fundraiser had gone well and that they raised a little over $1400: “I’m not saying as to toot our own horn but merely saying that the unconventional paired with the conventional fundraiser gets people’s attention. We got the media attention to prove it. It’s all about thinking outside the box.” The Butterfly Fund agreed. “Be creative … try something you haven’t seen before and people will love it!”
   
• When we asked members their suggestions for brands of footwear and socks that were EB-friendly in their own experience, a few members chimed in with feedback, like Josie Tripp: For Kid’s Life are good fleece socks and Carters fleece socks. Stride Rite sneakers.” Elizabeth Spolec Schwartz had some other recommendations: “My kids do good in crocs. I make sure they have new fluffy sweat socks under them but it is a bit too cold to wear them in the winter.” Trish Knuth offered another alternative and link: “Wigwam socks have no toe seams and are very nice because they wick away moisture and are soft and padded … this is a great website for socks. All sizes, all types. You can pick the material, length, thickness. http://www.wigwam.com/Products/CategoryLanding.aspx?CategoryId=G.”

The success of any community depends on its members, and we’re always so happy to see members interact and share with each other. Keep talking, everybody, and let’s continue to learn from one another!

Recently, we blogged about the various gifts people bring to community forums and the resulting roles that those of us participating in these online communities take on – such as a cheerleader, teacher, igniter or fact-checker. However, besides lending your voice to the cause (literally) or contributing in more obvious ways, such as through donating money or supplies or hosting an event to collect these types of resources, there are many other ways that you can contribute to the EB community. Some may be more obvious than others, but we hope that perhaps this starting list happens to inspire you or people you know who have indicated they want to do more.

• Marketing and publicity
  Do you know anyone who is a professional marketer – perhaps in public relations, advertising or other marketing realms? These individuals often have very creative and strategic minds that could be beneficial to anyone trying to garner interest in a fundraising campaign or plan an event. Don’t be reluctant to reach out to someone you know with these kinds of skills. And if you are someone in that career field and interested in helping out EB families you know, consider tossing your promotional hat into the mix to offer complimentary services or advice.
   
• Writing and design
  Are you handy with words or a talented web designer? Why not offer your support to those who may wish to write a regular blog, pen a book or set up a new blog page? We were overjoyed to learn about Kristina Wyatt, a young wife and mother who launched the EB Awareness program through which she offers blog page design services to those in the EB community wishing to launch a blog page. She also provides assistance to those who may need other EB-themed marketing materials for fundraising and awareness campaigns. Let that inspire any of our freelance writers and artists out there to devise what they can do!
   
• Cooking and baking
  Are you a whiz in the kitchen? Perhaps there would be an opportunity to develop a cookbook and donate some or all proceeds to your favorite organization. If there are local events being held, such as an awareness walk, auction or gala of some kind, can you offer your services to pitch in baked goods or side dishes? Or maybe you can donate your culinary services for a special auction prize package?
   
• Art or photography
  If you’re particularly skilled in drawing or painting, what if you were to offer your services to provide free sketches or paintings to EB families? And photographers, there are plenty of services you could extend to those families who may feel like a traditional photography studio will not be sensitive to their special needs and circumstances when setting up a group photo shoot. How can you alleviate this concern and share both your skills and compassion behind the lens?
   
• Financial consulting and accounting
  For many EB patients and their families, the monthly cost of the disease can take a huge toll on morale and any potential savings. If you are a licensed financial consultant, perhaps you could offer a free consultation or two to discuss strategies for addressing financial challenges. If you are a bookkeeper or certified public accountant, consider offering your services to put together a debt or medical bill repayment plan or provide assistance to get debts reduced with lenders or medical institutions.

Have you been thinking about yourself or someone else you know who has expressed an interest in getting more involved to help out EBMRF, DebRA, the Jackson Gabriel Silver Foundation or one of the other many relevant and valuable EB-focused organizations? What can any of you do to lend a hand in your own unique way? We want to hear other ideas from you, as well!

Last weekend, we ushered in a new year — and we are still reminding ourselves daily to watch those dates – January 2012, not January 2011. We’ll get the hang of it soon enough.

A new year is a great time to assess what you’re doing and plan now for those goals and milestones you want to achieve, and we think of the EB Resource in this same way. We do not take what we do lightly, and we want this communication tool and forum (comprised of the EB Resource blog and its respective Facebook and Twitter communities) to be the most beneficial it can be for its members.

This next year promises to be an exciting one for all of us involved in raising EB awareness and supporting individuals and their families. DebRA’s Patient Care Conference returns to gather families and offer helpful information and support, this time in sunny Orlando, Florida, which should be one of our most fun family destination host cities yet. And as we anticipate that this will be the year that our close-knit online community grows beyond 1,000 members, we wanted to take this time to encourage you to share with us ways that we can improve and expand this wonderful conversation. So tell us: here on the blog, on Facebook, Twitter and via email at leslie.rader@hollisterwoundcare.com. 

• What topics have we done a really good job covering and offering links or other sources for additional information?
   
• What topics are of interest to you for which we’ve only touched the surface?
   
• What are some questions you have that you would like the appropriate experts to weigh in on?
   
• Who else do you want to hear from in blogs and interviews?
   
• What other ways could we present useful tools and information to support EB patients and their families?
   
• What would you like to do to get more personally involved with the EB Resource community in the new year?

 We look forward to 2012 together, and your feedback will help make our community all that it can be to support one another.

We’re just days away from 2012, and we always love using this time to reflect on the good things the current year brought to us – maybe it was new people, a fresh perspective on a subject or added knowledge or activities that helped us learn and grow in some way or another.

What are you celebrating at year’s end? A new job? A victory for the family? Maybe it’s not an obvious piece of “good news” but more about a new understanding or acceptance of something in your life. Peace of mind and resolution are always meaningful causes to celebrate in our book!

So we want to take this time to say thank you to everybody who in some way has contributed to EB Resource this year– whether it was contributing a personal story or information for one of our blogs, becoming an active part of the Facebook community or re-tweeting our updates on Twitter. Let’s toast the old year as we usher in a new one.

• More community growth. We watched our EB Resource Facebook community grow yet again from nearly 800 members at the start of the year to just under 1,000! Many of you have introduced what we’re doing to friends, family and co-workers who have since friended us, too, and support the community in their own unique way, and for that, we thank you.
   
• Steady interaction. It’s been so exciting to be a part of a relevant, ongoing conversation that has shown no signs of slowing down, and one with so many caring people lending their voices. Sometimes we launched the topics and other times, members posed important subjects for discussion. This has been an organic process from the start, and we can’t wait to see new ways we’ll connect with one another during the new year.
   
• More and more voices in the blog community. Each year, we see a growing number of voices join the blogging movement. This is certainly not a new avenue for expression but one that can be particularly timely and critical in our community, with so little information or discussion available in mainstream media about EB. We won’t begin to take credit for encouraging more bloggers to open up their WordPress and Blogger accounts, but we do feel an itsy-bitsy sense of pride that some of our EB Resource Facebook friends are among those who’ve launched these new blogs. So we hope we’ve at least been influential in your decision and will continue to call on others to speak up if they have something to say.
   
• Even more fundraisers for EB causes. As great organizations like EBMRF, DebRA, the Butterfly Fund, PUCK and others find opportunities to create larger-scale events and campaigns, we are beginning to see more and more families and communities at a grass roots level launch their own community-based awareness events and fundraisers. This is wonderful news, because it starts at the neighborhood level, helping others become familiar with what EB is, what it looks like, what it means for those impacted and how others can help in basic ways to make a difference. So kudos to those who took the leap and launched their own first annual event this year. Keep us in the loop about your second annual events in 2012 so we can help you spread the word!
   
• The love Tweets. Thank you again, everybody, for re-tweeting and spreading the word during our recent second annual EB Awareness Tweet-a-thon. Hollister Wound Care was able to donate $2,500 to DebRA of America as a result of those who pitched in, taking the time and care to share messages with their own followers. Just think about how many new people were introduced to the topic for the first time because of your interest and energy. We can’t thank you enough!

As you get the funny-looking hats, party horns and champagne flutes ready for the new year, take the time to reflect on your own personal victories and challenges, and where you’re headed. And we’ll look forward to connecting with you in 2012!