Posts belonging to Category 'Links and Connections'

A Year of Highlights

As all of us wrap up projects and prepare to bring this year to a close, it can be helpful to look back. We can use the occasion to celebrate favorite memories and victories, reflect on losses and the lessons we took away from them and look ahead to a new year and all that it may promise.



This has been a year marked by milestones and often some big surprises – in the world of technology, science, entertainment, even sports and politics. We had some big moments for the EB community this year. In February, Rare Diseases Day, an international day for bringing greater awareness to rare diseases and with which EB organizations around the world gets involved, had its biggest day ever. New countries took part and more organizations were involved than ever before, and any time greater attention is paid to rare diseases afflicting families among us, this sheds more light on epidermolysis bullosa, too. It was a great victory. It will be wonderful to see what new attention can be garnered in just a few months when the international day of events and campaigns launch again.


Specific to the EB community, 2016 marked the return of debra of America’s conference renamed the Debra Care Conference, and there was great turnout! Once again, the event featured many terrific guest speakers and opportunities for EB families to learn, share and interact. Debra also had another successful showing at its annual benefit in October which took place just before the start of 2016 EB Awareness Week. It’s great to see more families taking the opportunity to launch their own awareness campaigns and fundraising events during this time.


In our conversations at work and play and online in our social media circles, many of us have remarked how 2016 has been a rough year in terms of loss. We lost so many of our childhood icons and favorite entertainers this year. In the EB community, when we experience a loss, it is deeply personal for any of us who have experienced that ourselves as well as for those who have been intricately involved in EB research, fundraising and caregiving. To our EB families who have been personally touched by loss at home this year, our network of support offers its heartfelt condolences as you move forward into this new year. We know how difficult it will be for you, and we will continue to be there for you every step of the way and encourage you to stay connected to the EB community and as involved as ever, continuing to champion the cause for better treatments, more research and greater support for our families. I know it is a lot to ask, but we as a community are stronger because of every one of us who brings their dedication and commitment to the cause. All of us need each other in this community and that couldn’t be more critical than it is right now.


None of us can predict what the new year will hold but I look forward to more opportunities to interact with the families and individuals who make up the EB community. I wish you all a beautiful holiday season and a very happy new year.

Where We’ve Been, Where We’re Headed

Recently, I attended this year’s annual benefit fundraiser for DebRA of America hosted by the Solomon R. Guggenheim Museum in New York City. Between the elegant setting and the graceful ballet moves of Julie Kent, the event was beautiful, and it was wonderful to see so many people come out in support of a shared goal — to raise funds to provide free supportive programs and services to families impacted by EB.

This year has seen great successes for both raising funds and raising awareness for many of the organizations who work closely with EB families, the medical community and researchers. Now many of us shift our attention to finishing up our year and getting planning underway for efforts to achieve our 2016 goals.

Many of us will continue to do what we can to make whatever resources are critical to EB families more accessible, and that includes information. One of the big events to look forward to next year is the DebRA Care Conference. This conference has a new name which DebRA hosts and invites EB families from across the U.S. to attend. It is a great opportunity for families to interact and learn from one another and for everyone to be brought up to speed about the latest treatments and clinical research outcomes. If your EB family has never been able to attend, I urge you to look into attending this year’s event in Grapevine, Texas. We will be sharing more details as they become available.

Along the way in 2015, we were introduced to new faces and voices coming out in support of those directly affected by EB — some famous and others unknown until now. Each time a public figure lends their fame to attract interest to an event or campaign, or a private individual or family invites others to take a closer glimpse into their lives, we move forward: forward in helping others better understand and in starting to break down any misconceptions that might emerge about the disease.

During the first few months of the New Year, we will be sharing all that we can about ways you can get involved in awareness events and the fundraisers we are aware of and as always, we hope to get more interactive conversation going between members of the EB community. If you have ideas for upcoming blogs or other features you would like to see on EB Resource’s blog or social media pages, please contact me at

From my family to yours, may you have a beautiful holiday season and a bright new year.

A Year of Enlightening

Every time the year comes to a close, it is a great chance to reflect on all that has taken place. There are so many new people we have been introduced to within the EB community and, of course, many big events we have shared together, the biggest of course being the bi-annual Patient Care Conference (PCC). What a wonderful event that was hosted by DebRA of America and the team at Gaylord Opryland Resort and Convention Center in Nashville this summer.

At this year's PCC, many families got an opportunity to interact with those deeply entrenched in the latest medical research and clinical trials revolving around epidermolysis bullosa treatments and the search for a cure. They also got the chance to meet with others diagnosed with EB and their families. Nothing is more inspiring than finding out we are not alone in our challenges and getting valuable insight as well as practical suggestions about caregiving, food and shopping challenges, and other areas of living with EB. This year's event sought out to educate families, the medical community and others directly impacted by those facing EB, and it certainly succeeded at that.

Once again, we launched our own interactive effort to make more people aware of EB with our annual EB Tweet-a-thon during EB Awareness Week in late October. Hope you were able to take part and share some if not all of our RTs posted hourly for 24 straight hours. If we even educated just a few dozen new people about this rare disease they had never heard of before, then collectively, we helped raise the presence of these families in need of support both from their neighbors and medical communities worldwide.

Education is a powerful tool to make things happen. Each time we take even a few moments to share information with another person or group of people, that shared knowledge holds the power to affect change or compel others to take action. I don't know what resolutions you may be settling in on for the new year, but I do hope one of them is to continue helping to raise EB awareness by whatever means available to you.

Thank you, everybody, for all of your support this year at the blog and in our Facebook and Twitter communities. We look forward to a bright, promising new year with each of you. Best wishes for a safe and happy holiday season.

These Are a Few of My Favorite Posts

We’ve been swept up in all of the sights and sounds of the holidays – the Christmas songs, movies and old animated TV specials that get re-broadcast every year. And this year we had an added treat – we could watch the Julie Andrews original of The Sound of Music or the new live TV version starring Carrie Underwood. As we were humming along to one of the classic tale’s signature tunes “My Favorite Things,” we arrived at the idea behind this week’s blog: a recap of some of our favorite blog posts from the year.



So here’s a second chance to read them, in case you missed it.

Sounds of the Season in Our Community


What sounds brighten up your holidays? For us, it’s any number of things – the sound of children laughing or that sudden excited hush that overtakes little ones as they unwrap a gift or lose themselves in the joy and discovery of trying out a new toy or game they’ve just received.


We also love hearing the harmony of voices coming together to work toward the greater good of a common cause. Some collaborative efforts may develop organically when two like-minded individuals or organizations find they share the same vision, excitement and desire to make something happen; and yet other partnerships can result completely by accident once different parties realize the power of two versus one and that they can better serve their beneficiaries teaming up and pooling resources.


Think about your own circle of close friends and family and who falls within that circle, and then extend beyond that tight-knit group and consider the next circle – your co-workers, your neighbors, your children’s classmates and their families – and then go outward one more circle to those you may have met through EB Resource or another EB-focused community or nonprofit, quickly learning that you shared a deep understanding of what day-to-day life is like when facing EB. As you picture this great big series of circles within other circles, consider this question: how can you bring some of those voices, some of those completely separate circles, together in a very real, natural and beneficial way for those living with EB, because there is one very important factor the people who comprise these circles all have in common… you.


So at this time of year when we’re jingling bells, spinning dreidels, and many of us are scrambling for gift ideas as well as ways to give back or support others at the holidays in some way, take a few moments to consider the sounds of the season which chime about togetherness, cooperation and kindness, and listen more closely to the voices that make up your world, your various communities and circles, and the messages they share on a daily basis. This season can be the perfect time to introduce ourselves as we prepare and set our minds toward a bright, positive new year.

Words from the Community

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!

Second-Chance Blogs

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.

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.

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 We love hearing from you!

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.

A Little Birdie Told Us

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

Blogging: Inspiration & Education

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?