Posts belonging to Category 'Links and Connections'

The EB Resource Grapevine

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.”


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!

Community Contributions

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!

EB Resource, A Look Ahead

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

  • 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.

Year’s End Celebration

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!