A Look Back and a Look Ahead for EB Families


The new year will be upon us in just days. As we get ready to venture into 2018 uncertain of what the year may hold, we do know this: there are some exciting things ahead so let’s toast to the best of this year and what is yet to come.


In 2017, we saw a rise in the number of clinical trials in the U.S. and around the world focused on epidermolysis bullosa. As of December 2017, 20 trials are currently recruiting or launching though not yet recruiting, a strong indication that the research community dedicated to EB and other rare diseases is growing and becoming more vested in developing better treatments and a cure.


Various organizations that support EB patients and their families have continued their efforts to garner more media attention about the disease as well as research and resource dollars. Stories covered across major media outlets over the past year such as the Washington Post, New York Times, Forbes and Rolling Stone are reaching a wider audience and shedding light on a little-known disease. For The EB Research Partnership (EBRP), 2017 has meant record-setting fundraising dedicated to EB research including $1.3 million at its annual fall gala Action for Jackson and $135,000 at its annual poker night All in for a Cure, both held in NYC.


Groups also are making new strategic alliances to share valuable knowledge and data and encourage collaboration among clinical communities. Debra of America recently announced its new partnership with Jefferson Dermatology at Thomas Jefferson University (Philadelphia, PA) to establish the first ever Adult-only EB and Skin Cancer Clinic.


Next year, EB families can look forward to. Debra of America hosts its debra Care Conference July 22-25, 2018 at the Grand Sheraton at Wild Horse Pass in Chandler, Arizona. Held every two years, the event brings together EB patients and their families from across the country to meet with medical professionals, researchers and other resources to support EB families. As organizations like debra, EBRP, Epidermolysis Bullosa Medical Research Foundation (EBMRF) and the public figures that support them, garner greater media interest and fundraiser support for their campaigns and events, new resources and knowledge can become more readily available to EB patients and the people who care for them. It is very exciting to see what may be in store for all of us living and working within the EB community.


For now, we wish you all a beautiful holiday season, and will look forward to connecting again in the new year. Be safe out there, everyone.

Your Role in EB Awareness Week


The last week of October marks EB Awareness Week. For those who are unfamiliar with it, this special campaign was launched globally in 2007 and is now recognized by 112 countries across the world. Each year during the week of October 25-31, organizations and individuals across the world hold EB awareness events and fundraisers to not only build more awareness for epidermolysis bullosa but also garner greater media attention and involvement at all levels – in the business, social and legislative spheres.


For those directly impacted by the disease or with friends and family facing EB, it can be an ideal opportunity to host an event or get behind an established campaign. But what if you are neither and have only recently learned about EB and its devastating effects on those afflicted — what can you do during EB Awareness Week 2017?


Here are just a few ideas.


  • Check out the event calendars at various EB-focused organizations, such as debra of America, the EB Research Partnership and EBMRF, to name a few. See what upcoming campaigns are lined up during EB Awareness Week and figure out how you can best support organization- or supporter-led events in your community or online
  • Use avenues via your existing channels to raise research dollars or host your own event during EB Awareness Week. Many of us network informally, in the neighborhoods, community sports and school groups, and quite a few of us in the business sector, may do so for our services and companies. Why not look to any of our existing involvement as a channel to share and educate. Propose a campaign or small event held during the week or later in the year. Raise funds that could support a local family affected by EB or contribute to an organization with programs in place to support EB families across the country. Prove that there truly is power in numbers.
  • Encourage your children to get involved and learn more about EB. There is never a better opportunity than an awareness week for an important cause to teach our kids lessons in compassion and philanthropy. Demonstrate firsthand to your children the value of caring for others beyond ourselves and making a difference in the community.
  • Reach out to local media beforehand to make them aware of EB Awareness Week and if you know of anyone in your community directly affected by EB, encourage them to share their EB story with area newspapers and TV news affiliates.
  • Finally, here is one thing you can do straight from your phone or computer. Help EB Resource spread the word during our Annual 24 hour EB Tweet-a-thon that kicks off at 10 a.m. EDT Wednesday, Oct. 25 and runs through 9 a.m. Thursday, Oct. 26. We will be posting hourly on Twitter for 24 hours straight in recognition of the first day of EB Awareness Week. This year’s theme is 24 Reasons to Take Part in EB Awareness Week. You can help us reach even more people with your RTs. Share our posts with your own followers on Twitter and educate them about epidermolysis bullosa, too. Add the hashtag #RT4EB17 and help us raise awareness and compassion to learn more about EB as we set out to grow our community of support for EB families.


Thanking Those Who Spread the Word


Thanksgiving is a time during which many of us attempt to slow down (except during meal preparation) to remind ourselves what we have to be thankful for, so we think this is a perfect time here at EB Resource to do some thanking of our own.


When we set up EB Resource nearly five years ago, one of our core goals was to help members of the EB community connect with one another as well as with resources available to them in the medical, nonprofit and medical supply fields. We would not be able to set out to achieve this goal every day if it weren’t for the following invaluable people.


  • Nonprofits devoted to supporting EB Awareness and support for families impacted by the disease – From DebRA and EBMRF to EB Research Partnership and I Refuse EB, and several other grass roots organizations and groups of various sizes, these groups and individuals have dedicated themselves to finding their own unique niche for drawing more attention to the cause and raising funds for the particular need they hope to address. Each may have its own distinct goals and strategies but there is one tie that binds them all and that is a collective commitment to take action and inspire others to join in a movement to support the EB community.
  • Medical and Educational Institutions which have committed resources to EB research – Physicians and scientists are more readily joining forces on both the care and research fronts to develop and test new and improved treatments and explore potentially groundbreaking trials in the hopes of finding a cure for the disease. With care and research teams committed at such innovative institutions as University of Minnesota, University of Cincinnati Children’s Center and Stanford University, among others, many of us in the EB community remain hopeful that these brilliant minds will uncover new and promising developments.
  • Parents and Other EB Caregivers who share their story in the media, in their communities and online to educate others – We frequently share on EB Resource posts that spotlight EB families from across the world who have reached out to their local media to gain greater attention for their story and for the EB community as a whole. Each time a new link is cataloged on Google and other search engines, we offer another window for a glimpse at life with EB. Though we know that every story does not capture the same poignancy, accuracy or depth of the story, we are still encouraged that a growing number of media organizations are beginning to dig deep into the EB story, and we owe it to the many parents and caregivers who have shared their own family’s struggles through these articles, their own blogs or books to educate others about epidermolysis bullosa.
  • Supporters within and outside of the EB community who participated this year and in our past EB Tweetathons – We place much value on circles of influence and regardless of how you use your own social media accounts, so we thank those Twitter users who relay our annual messages during EB Awareness Week to their online friends and followers to help us educate and motivate others to get involved in raising EB awareness. We know it can take time, energy and diligence to retweet them all, but some of you do all that you can to make it happen and we so appreciate all who have taken part. Thank you!
  • Other Supporters, whether in manufacturing, the arts, business or other sectors – Messages continue to move out into the mainstream media from sources as diverse as Pearl Jam frontman, Eddie Vedder to tennis great, Mats Wilander to medical supply companies and large corporations, college groups, playwrights, photographers, actors and more who find unique ways to use their forum, audience or talents to shine a different light on EB and the people affected by it.


We are grateful to all of you for the many ways you’ve used your tools and voices to speak up for the EB community. And during this month of thankfulness, we hoist a mug of cinnamon-tinged apple cider or pumpkin-spiced latte around the dinner table of our EB community.


Thank you for all you do.

Teaming Up for EB Awareness

With EB Awareness Week right around the corner, we thought it would be a good time to share information about upcoming EB-related fundraisers and awareness events that we have learned about. If you know of others, please feel free to leave a comment on the blog, Twitter or Facebook with all of the details. And good luck to all of the event organizers! We are wishing you much success with your missions!

  • Virtual Strides for EB (Online) – EBMRF is hosting a unique month of online fundraising during which participants can register at the Virtual Strides website and connect their racing success at any location while promoting EB awareness. Thursday, Oct. 1 through Saturday, Oct. 31 Distances include 5K, 10K, and half-marathon. An FAQ about how Virtual Strides works can be a helpful read so visit this page here to learn more about the process. Cost to take part is $28. Register for the Butterfly Children virtual 5k/10k/Half Marathon and receive a custom race bib and 4" butterfly medal. A portion of the proceeds from this event will be donated to EBMRF. For more information or to register, click here.
  • EB Resource 24-Hour Tweetathon (Online) – It's time again for our annual tradition during which we devote 24 hours entirely to tweeting about EB on the hour, every hour. We ask those who follow the EB Resource Twitter page to RT as many if not all of our tweets designed to introduce EB to those unfamiliar with the skin disorder and spotlight helpful EB resources and voices in the community. We ask each of you to RT whenever you can during that time and be sure to include our  hashtag #RT4EB. The Tweet-a-Thon to starts noon Monday, Oct. 26 and runs through the 11 a.m. hour Tuesday, Oct. 27. Thank you in advance for your support!
  • Community Council Webinar on Active and Upcoming Clinical EB Trials (Online) – In honor of EB Awareness Week, those interested in learning more about EB can register for a special webinar at 7 p.m. Tuesday, Oct. 27 presented by top researchers and representatives to answer questions about current clinical EB research. Researchers from various companies and educational institutions including Dr. Jakub Tolar from University of Minnesota and representatives from Stanford University will be on-hand. For more information or to register online, click here.
  • Team DEBRA at the NYC Full Marathon (New York, NY) – Show your support for the DebRA of America Team participating in the 2015 TCS New York City Marathon onSunday, Nov. 1. To help raise awareness and funds for research and free programs, sign up to be a a runner or donate! 100% of donations raised will benefit programs and services for EB. For more information, click here.
  • Action for Jackson 2015 (New York, NY) – Come out for a tasty evening of cocktails, appetizers and auction bidding at The New York Public Library 6:30 p.m. to 9:30 p.m. Thursday, Nov. 5 and support the EB Research Partnership. The theme this year is An Evening to Celebrate Progress. Attend the fundraiser and support the research efforts of the organization. For more information or to purchase tickets, click here.
  • Annual DebRA of America Benefit (New York, NY) – Spend an evening at the lovely Solomon R. Guggenheim Museum and enjoy an exclusive performance by iconic former American Ballet Theatre Principal Dancer Julie Kent along with others at this annual fundraiser to be held on  Monday, Nov. 16 at 6:30 p.m. to 9:30 p.m. Evening includes cocktails, hors d'oeuvre reception, silent auction, and a DJ set by platinum-selling singer/songwriter, Kate Nash. For more information or to purchase tickets, click here.

EB Awareness Week

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your healthcare professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

EB Awareness Week is nearly here, an annual, international campaign to educate others about epidermolysis bullosa as well as garner support for EB families. Each one of us has the ability to make a difference and be a part of this collective effort. EB Awareness Week runs from October 25 through October 31. How will you be involved?

Here are some suggestions:

•    Support events far and wide in any manner possible.
Visit sites like DebRA of America, the EB Research Partnership, EBMRF and others for information about local and national events taking place during EB Awareness Week. Spread the word via social media platforms so that others who are located in those areas can take part and find ways to show your own support whether near or far, either through fundraising or promotional means.

•    Coordinate your own virtual or in-person EB Awareness event.
It’s not too late to kick off a fundraising or awareness campaign online or host a small event at work or in your neighborhood. Check with your HR representative about holding an informal fundraiser at the office or find out what is required to set up an information table outside your community center or local library.

•    Spread Your Own EB Message to Raise Awareness.
Do you blog? If so, why not include a special entry during EB Awareness Week? Or better yet, maybe blog something different about EB that people may not be aware of or post on a social media platform a different EB-related link each day. We appreciate you including EB Resource for one of them, if you do!

•    Extend a Hand Wherever It Is Needed Most.
If you personally know an EB family, take this time to reach out to them this week and offer to pitch in with some errands to alleviate stress. Or better yet, ask the parents what you and your family could do to best support them. Sometimes people are afraid to ask for help but when an offer is extended, it may be just what is needed.

•    ‘Pass It On’ During Our Upcoming Tweet-a-Thon.
Every year we take 24 hours to devote entirely to tweeting about EB hourly. We ask those who follow the EB Resource Twitter page to RT as many if not all of our tweets designed to introduce EB to those unfamiliar with the skin disorder and demonstrate ways they can get involved to learn more or be a part of the movement to find a cure and better treatments for EB. We simply ask those who RT to include our designated hashtag #RT4EB. So look for that Tweet-a-Thon to begin 9 a.m. Tuesday, Oct. 28 and run through 8 a.m. Wednesday, Oct. 29.

Reflections on 2013


Whenever a year ends, we might feel compelled to look back on it and reflect on what happened – the victories, lessons learned and other memorable occasions. For us, 2013 was a pivotal year for the EB community and also for EB Resource, too.


We saw researchers continue pursuing research findings for a variety of EB-focused clinical trials already in progress. Organizations like DebRA of America, EBMRF and Jackson Gabriel Silver Foundation continued to spear efforts to raise awareness, funding for EB clinical research and support for the EB community. Planning for the Patient Care Conference got underway as details of next year’s event, July 30-August 2 in Nashville, Tenn., were announced.


In 2013, I moved from a member role on the Board of Trustees at DebRA of America to that Board’s President. The greater role and involvement has been a lot of work but exciting to be part of such a forward-thinking organization and I’m honored to be working alongside the other Board members and DebRA’s executive director Brett Kopelan.


Unfortunately, every year of triumphs and celebrations brings some sadness, too, and each time we would hear of another member of the EB community passing, we felt a sense of personal loss, which also brought many of us closer together to continue to fight for greater awareness for the disease.


What will 2014 bring? It’s hard to say for certain but I know as we all go forward, we’ll find new avenues for reaching out to others to educate them about this little-known disease and we’ll find other ways that we can be supportive of each other using the knowledge and resources we have and new ones that we collaborate on or create altogether.


We wish all of you a bright and beautiful new year, from our family to yours.


Small Steps Mark Big Success

This week, we continue to reach out to others and educate as EB Awareness Week rolls on, concluding Thursday, October 31. For those who are not usually comfortable putting themselves out there in such a visible way to campaign for a cause, even one so close at heart, it may seem a little intimidating. But like many things that we must do for a greater purpose or good, sometimes we just have to step out of our “proverbial” comfort zone and embrace the task at hand.


There are big challenges ahead of us in the EB community but as you recently may have read in an interview with DebRA executive director Brett Kopelan, there is also much opportunity and some very exciting things happening within the research realm, for example, that could lead to improved treatments and possibly even a cure in the future. Some great progress has been made by several of the universities and children’s hospitals who are heading up the clinical trials that could be completely pivotal in charting the course of EB in the future.


Much like the tasks before us on a day-to-day basis living with EB and caring for someone with EB, the tasks we must embark on during EB Awareness Week may seem daunting, and we may feel sometimes like we’re running uphill with many miles to go. Because of this, if we’re not careful, we can simply write off the outcomes of a single community awareness event or school fundraiser as insignificant in the big picture. But they are not. Far from it. EVERY small step that each of us makes to educate one more person about epidermolysis bullosa contributes to a huge gain in awareness. Our work may be on a smaller scale but it does in fact contribute greatly to the overall impact of organizations like DebRA of America, the Jackson Gabriel Silver Foundation and EBRMF, who continue to find new creative ways to get their messages in front of key decision-makers, influencers and contributors. 


So as you finalize those details on an upcoming fundraiser you might be hosting at work or an online campaign that you are planning through one of your social media channels, do not minimize the work you are doing. It is all QUITE significant and each inch of progress does ultimately contribute to miles of progress.


If no one has had a moment to break from their own planning to say it to you already, then let us be the first ones to say it — thank you. For all you do to help be a voice in the EB community in whatever capacity you can. It is needed, it is essential and it is heard.

EB from a Global Perspective

To people just becoming educated about epidermolysis bullosa, it may come as a surprise to see how far-reaching efforts are to raise awareness and research dollars to find a cure (long-term) and better treatments (short-term) for those diagnosed with EB. For example, did you know that there are several dozen different national DebRA groups across the world…from nearby Mexico, Canada and here in the U.S. to across Europe and its various organizations and as far reaching as China, Malaysia, Russia and Japan?
The global network known as DebRA International serves as a centralized hub online for people to gather information about the 48 different national groups as well as their website addresses and contact information. We’re constantly trying to stay abreast of EB headlines across the world and are frequently impressed with what we hear taking place not just here with DebRA of America, but in other countries, too. For instance, DEBRA Ireland has done quite a bit to engage its various communities with unique events and opportunities to educate. Recently, they hosted a family day and their current online calendar reflects a diverse mix of fun and memorable ways to connect including a motorbike run, a dance marathon, building event and even a coast to coast, multi-sport challenge which is sure to garner a lot of media attention and participation nationwide.
Throughout the year, DebRA International is also instrumental in the coordination of conferences across the world to bring together scientists, activists and others deeply involved in the cause for discussions about gathering funds and conducting clinical research, including one just held in late May in Lisbon. In September, a second annual EB conference will be held in Salzburg and later that same month, DebRA’s International Annual Congress in Rome. These are wonderful opportunities for people to share valuable information, insight and avenues to collaborate or pool resources globally where it makes sense.
In this country, we still have work to do across the various EB-focused organizations to raise EB awareness and research dollars, not solely DebRA of America but the other very active groups such as EBMRF and Jackson Gabriel Silver Foundation, among others, as well. It is comforting to know that we are not on this mission alone and that every time there is a small victory for any one of our various groups championing the cause for individuals and families impacted by EB across the world, it is in fact a huge victory for all of us.

Q&A with an EB Advocate: Jamie Silver of Jackson Gabriel Silver Foundation, Part I

Jamie and Alexander Silver founded the Jackson Gabriel Silver Foundation in 2010, following the birth of their son Jackson and his diagnosis with recessive dystrophic epidermolysis bullosa. Recently, we spoke with co-founder and mom Jamie about what the foundation is doing to make a difference in the EB community. We will be featuring this conversation over the next two weeks.


This week, Jamie talks about the family’s introduction to EB and how she and her husband set out on a mission to create an organization focused on one key objective: supporting research efforts to develop a cure and improved treatments.














EB Resource (EBR): Let’s talk about how you and your husband first became aware of EB. When was your son Jackson born and how long afterward was he diagnosed with epidermolysis bullosa?

Jamie Silver (Jamie): Our son was born in fall of 2007. When he was first born, the doctors didn’t notice anything wrong other than his nails were discolored and that he had a blister inside his mouth, which were not thought to be major problems. When Jackson had a heel print the next day, the nurses covered the area with a Band-Aid, and when it was subsequently taken off, it removed the skin from his entire heel. They immediately rushed him to the NICU for special care. In the NICU, he received an IV that was taped to his finger, and when that was removed, it took all of the skin off of his finger. I think many parents of newborns with EB hear a similar story — the hospital staff is well meaning but has never seen EB before and doesn’t know how to handle a child born with it. In Jackson’s case, he was fortunately diagnosed soon after his birth by a pediatrician who had trained at Children’s Hospital of Philadelphia where she had seen EB prior.

EBR: What’s going through your mind as a parent when you receive news of this diagnosis? Were you familiar with it at all?
Jamie: No, we had never ever heard of EB. Jackson was our first child. We were completely shell-shocked. Thinking back to that time is a blur. I have memories and glimpses of myself sitting in the NICU and remember being so frightened about what they were telling me and all of the complications that Jackson might have as a result of EB. Within a week of his birth, we transferred him to a hospital where they had treated other newborns with EB and had a specialist on staff. I remember the first time we ever watched them do a bandage change, and they took out all of these needles and supplies and thought, "I don’t even know how to take care of a baby yet. How am I going to be able to do this?" He spent several weeks in the NICU and we learned how to care for him before bringing him home.


EBR: Tell me what that experience was like for you and your husband.
Jamie: EB’s physical manifestation arose quickly. Jackson lost all his nails and formed blisters in his mouth and all over his body. My husband and I had to learn how to treat our son and improvise in new situations as they arose. I was briefly in touch with some other families, but in the beginning, I found listening to the stories overwhelming. It took me a little time before I could fully immerse myself in the community because I needed time to process everything myself. My husband started doing a lot of reading and learning about what was happening in the field of research. It took time to adjust to the reality of our lives versus our expectations.  We are stronger as a family as a result, but we worked hard to get there.


EBR: Where along your journey did you decide that you wanted to do more, that you wanted to launch an organization focused on the EB community?
Jamie: What really drove us to start our foundation was that we wanted to focus our energy purely on funding EB research. Alex quickly realized that with such a rare disease and diverse patient population spread all around the globe, pharmaceutical companies were going to need a push to be interested in EB, because it is incorrectly perceived as too small of a market. It was going to rely on families working with policy makers and the private sector to advance EB treatments in a timeframe that helps today’s kids. That’s where we got the idea to create something focused solely on research and with a lean infrastructure, we could pass almost all of the funds onto researchers.


EBR: And you launched the Jackson Gabriel Silver Foundation in 2010, right?
Jamie: Yes.  In 2009, we held a fundraiser for a family fund set up within DebRA of America. We knew we wanted to educate the people in our community and raise money for research (specifically, David Woodley’s protein-replacement therapy at USC). We thought that if 100 people attended that it would be amazing. It turned out that 200 came and we had to stop selling tickets!

We raised almost $70,000 at our first event and quickly realized that we were onto something. If we were going to raise a lot of money, then we wanted it to be specifically for research, as we think it is the best gift that we can give any child living with EB, and we also knew that we could keep expenses low so most of the funds would go to the researchers. So that’s where the idea of starting a 501c3 began and we launched in 2010.

EBR: You mentioned that your group is open to supporting various kinds of therapies and treatments across different institutions. Are there particular facilities or research organizations with whom you’ve partnered most frequently? Tell us about the different research efforts your organization supports.
Jamie: The first big project that we raised money for was Dr. (David) Woodley and Dr. (Mei) Chen at the University of Southern California who were working on a protein-replacement therapy for dystrophic EB. We felt it held a lot of promise based on years of published research and was showing good results in models. Our research showed that protein-replacement therapies had successfully made it through the FDA and the protein in question – Collagen VII – was a “cousin” to Collagen I, which was approved for cosmetic treatments. In speaking with experts, it also seemed that protein-replacement therapy was the most likely candidate to get to those who needed it first given the regulators’ understanding of it. Finally, our Foundation is backing both treatments that increase quality of life significantly as well as cures. While protein-replacement therapy is not a cure, it could make the difference in living a long and full life vs. a shortened and painful one.

We have also supported protein-replacement therapy at Stanford University and stem cell gene therapy at the University of Minnesota (not the current bone marrow transplant program). We have set up a matching campaign with EBMRF (Epidermolysis Bullosa Medical Research Foundation) for the University of Minnesota and Dr. (Jakub) Tolar who is coming up with a gene therapy which involves taking cells from EB skin and re-engineering them. Because it’s the patient’s own cells, there would be less risk of rejection. So they wouldn’t have to go through the same chemo and all of the things that have made the current stem cell transplants so tricky. DebRA is also supporting Dr. Tolar’s work.  At Stanford, they’re also doing some protein therapy through a different method of delivery, so we are interested in seeing which one works most effectively, which could be something different for each person.

Also, along with the EBMRF, we have established something called the EBCRC, the Epidermolysis Bullosa Clinical Research Consortium. It’s a research consortium so there are a variety of different physicians at leading research hospitals that meet regularly to collaborate on best practices and translational research. We established the Consortium to advance their knowledge of EB and improve outcomes for EB patients.

EBR: That sounds very similar to what they’ve tried to do with Stand Up to Cancer and that particular movement to unite cancer research efforts.
Jamie: Yes, Dr. (Alfred) Lane at Stanford and other doctors mentioned that there was a research consortium for rheumatoid arthritis and they found so much great stuff has come out of these doctors collaborating, so that was the premise behind it — that it has worked really well for other diseases in advancing care and research. It should also help support these research trials that are going to be starting in 2013.

EBR: Is the Consortium and its discussions and findings something that is currently a resource available to the public through a website or other communications or is the collaborating being done privately between the institutions solely?
Jamie: They are meeting and working together privately for now with the goal of expediting clinical research on EB. One thing that has really struck us in talking with the researchers and having a front-row seat of what is happening in EB research is the doctors’ enthusiasm. I think the doctors feel way more encouraged than they ever have, that things are starting to move ahead, there’s starting to be more funding available and people are working together. We just returned from the Patient Care Conference and there was a real sense of optimism from the research front.

Next week, we’ll continue our conversation with Jamie as she discusses which fundraising efforts have been most successful for the foundation and what her son thinks of mom and dad’s work in the EB community. For more information about the Jackson Gabriel Silver Foundation and the work they are doing, visit the organization’s website at www.jgsf.org.

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?