Thank You, EB Voices!

We wanted to take this month that celebrates thankfulness to send along our own gratitude to the individuals and groups whose work and words have helped to raise awareness, and, in some cases, research or support dollars for those diagnosed with EB and their families. We have frequently featured them here and called them "EB Voices" because they, in their own unique way, have spoken up and made their voice heard. This can be really difficult, particularly in a world of so many loud voices booming back at us while we try to bring focus to a rare disease like epidermolysis bullosa.

We have often featured those voices through interviews or special guest blogs. Since some of our followers could be new to our blog or have only joined us this year, we thought it would be a great opportunity to share some of those past links with you as our way of introducing you to merely a handful of the wonderful people out there who do their part to raise awareness about EB every day – some are patients, others  family members, and still others, authors or advocates, but all of them have something to say. And we are appreciative that they take the time to do something about it.

So we introduce you to some past featured EB Story conversations. Thanks for reading!

Kudos to EB Organizations Getting Creative

Sometimes to get people energized, re-charged and talking about a cause important to you, you have to think outside the box and use your imagination to spark others’ interest. We applaud the ways some key EB-focused organizations have been able to come up with fresh, inventive ways to not only raise funds for their group’s efforts but also compel people to want to learn more.

  • A Fund Worth Smiling About
    We first learned about DebRA’s Smile Fund earlier this year. Inspired by the memory of 7-year-old Grace Catherine Peshkur, who was born with Recessive Dystrophic Epidermolysis Bullosa and lost her battle with the disease in 2009, this program grants wishes to children with EB. Granted gifts and activities might include special birthday parties; tickets to a special theater production, concert or sporting event; family portraits; or items such as toys, books, electronics, DVDs, video games, art supplies or webcams to keep in touch with distant friends and family. Criteria are listed on the DebRA site. All submitted requests are reviewed by a designated committee, and one request is selected each month to be granted. For more information about this program, email or call 212-868-1573, ext. 101.
  • Fundraising as Easy as Phoning It In
    Pioneering Unique Cures for Kids (PUCK) has been consistently finding new, innovative ways to raise research funding for the University of Minnesota’s medical foundation, certainly instrumental in the advancement of clinical studies centered on EB. So it comes as no surprise that this group was one of the first to use technology as a quick, easy means to promote the cause. Users can text “BELLA” or “TRIPP” to 50555 and a donation of $10 will be made to the university specifically for EB research purposes. The donors’ phone bills will reflect the charge or be deducted from their prepaid balance if that is the nature of their accounts. Users can do this up to six times with all donations being reserved for EB medical research. All standard messaging and data rates apply. To learn more about this, visit
  • Cooking Up Support for EB Families
    Earlier this year, the Butterfly Fund marketing a new cookbook containing a variety of long-time family recipes, and they discovered they had a huge fundraising hit. Cookbooks cost only $15 with $3.95 added for shipping, and total proceeds from the book went toward The Butterfly Fund’s various fundraising efforts to support EB families and clinical research. What could you develop and market with value and purpose for customers that could also serve as a great fundraising tool for your favorite EB charity?
  • A Refusal to Ignore EB
    Last month, we shared a two-part conversation with photographer Christie Zink of This Little Light, who shared compelling inspiration behind her I Refuse campaign. She took a concept and expanded it visually across a created kit of materials that consumers could use to spread awareness about EB to their friends and family. Proceeds from the $35 kit go directly to the PUCK and its EB research fundraising efforts. The kit includes a variety of promotional items from an attractive T-shirt and water bottle to bracelets, decals, bumper stickers and more. Zink launched the campaign in late May in honor of Bella Ringgold’s third birthday, and she says she could not have anticipated the response. She re-opened the ordering window several times between then and late June to accommodate the expressed interest in the kits and says she’s likely to market them again later in the summer. To stay current on any further developments with the campaign, visit the I Refuse EB campaign blog for the latest updates.

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?

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!

EB Events This Summer

There are several fundraisers and EB-related events being held across the country this summer that offer opportunities to interact with others faced with EB and raise awareness about the skin disorder.

If you know of any other events taking place, let us know. Just send all of the details (date, time, location, cost to attend if it applies and info about the event itself) to and we’ll be sure to get the word out to the rest of the EB Resource community.

And if you do happen to attend any of the events we’ve listed and would like to share your thoughts in words or pictures, we’d love to hear from you. Thanks!

June 16-19

2010 Patient Care Conference (Cincinnati, OH)

DebRA hosts this free conference held every other year that enables patients, families and caregivers to hear from medical specialists and vendors about the latest clinical news and research findings and meet with each other to share information.

June 20-25

Camp Wonder (Livermore, CA)

Young patients (ages 7-16) living with painful skin diseases can take part in a fun, FREE week-long camp of outdoor activities like swimming, hiking, fishing and archery and indoor fun, too, including theater and arts and crafts, all sponsored by the Children’s Skin Disease Foundation.

August 1-7

EB Survivors Camp (Park City, UT)

United Survivors with EB (USeb) sponsors this summer camp offering great opportunities for young patients to interact and have fun. To apply for the camp, click here.

August 6

1st Annual Crossgates Golf Outing (Millersville, PA)

Dave Cornman hosts a new golf fundraiser at Crossgates Golf Course with all proceeds going to DebRA for its various programs and services.

August 8-13

Camp Dermadillo (Burton, TX)

Part of Camp Discovery for kids ages 9-15 and located between Houston and Austin in the rolling hills of Washington County, this is a unique camping and retreat facility designed to enrich the lives of people with special needs and is sponsored by the American Academy of Dermatology. And I’m happy to report that this summer I will get the opportunity to serve as a camp counselor there, too!

September 11

2nd Annual Butterfly Ball (Sonoma, CA)

This annual event benefits The Butterfly Fund and Miracles through Music to raise funds and awareness to improve the lives of people living with epidermolysis bullosa. The organizations are currently accepting donations and silent auction items for the event.