Social Media and Support

It has been amazing to see the online EB community grow as much as it has over the past 5+ years. I have watched social media evolve into a means through which we can educate and raise awareness, a feed to interact and communicate and a bridge to minimize distance and connect people. Though EB is still considered a rare disease, our ability to link to one another quickly and on a timely basis about the subject makes the world feel a little less vast. 
It was just over six years ago that we first launched the EB Resource blog as well as our Facebook and Twitter pages. At the time, we set out to reach anyone directly impacted by epidermolysis bullosa to provide a place where they could turn to gather information about important resources available to EB patients and their families. We also hoped to begin growing a support network comprised of those profoundly touched by what they learned about EB, people who wanted to do something because of this awareness.
Across the social media universe, we have seen the power of connection and what it can do in all types of communities — whether it is groups of people joined because of a shared cause or concern, like interests or circumstances or a common mission. We have seen the reach of a community’s commitment to retweet and spread information within our own feeds during EB Resource’s annual tweet-a-thon held each October during EB Awareness Week. But we know there is always more we can do here to help facilitate a supportive environment and avenues for members of the EB community to connect. And that’s where we need your help.
As we continue to build the community in the new year, we hope to include other voices and resources we discover along the way and we want you to reach out to introduce them to us. Also, if there are topics or areas of interest you would like to see covered so we can add more value to the blog or create greater opportunities to interact across our Twitter and Facebook pages, we want to hear those ideas from you. Email me at Help us make 2017 an even better year for connecting for the members of our community. Thank you in advance for helping us to do that.

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.

Helping the EB Community Be Heard

Every year, EB communities across the globe take this upcoming week to reach out to others and educate them about epidermolysis bullosa. EB Awareness Week is recognized and runs October 25 through October 31 in 112 countries around the world. During this time, many organizations focused on the disease coordinate awareness campaigns and fundraising events to not only draw more attention to a rare disease still unknown to many but also to support efforts to develop better therapies and a cure.

In the past at our blog, we have offered many suggestions for how you can make the most of your EB Awareness Week including tips for planning fundraisers and plotting out your own awareness campaign. This week, we want to ask you for some assistance. In addition to coordinating your own activities and support for others’ events, you can help us this Tuesday and Wednesday.


Once again, EB Resource will be holding its annual 24-hour EB Awareness Tweetathon. During this time, we will tweet every hour starting at noon on Tuesday, October 25, the first day of EB Awareness Week and continue to post through noon Wednesday, October 26. Our theme this year is EB: Just the Facts, Ma’am, and we will be focused on sharing some things about EB that followers may or may not realize about it.


So what can you do? Share, share, share! Retweet our hourly tweets to your own followers including our hashtag #RT4EB16 and send out any of your own tweets about EB with the same hashtag in support of our EB Awareness campaign. Help us spread the word and educate others about a disease so few people understand.


Good luck, everyone, in your efforts to raise EB awareness this week. Be sure to share with us all that you’ll be doing, too, at our Twitter and Facebook pages. And don’t forget to stop by our Twitter page and help out, starting Oct. 25 at noon for 24 hours straight!

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.

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.

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.

Dedicate Yourself to Raising EB Awareness

It’s here: National EB Awareness Week. As always, we’re urging all of the members of the EB Resource communities at both Twitter and Facebook to use this week as a wonderful platform to educate others about epidermolysis bullosa. This is a perfect opportunity to share your own story, fill people in on the facts about what EB is and what life is like for those diagnosed and for their loved ones caring for them.

This can also be a great time to host or throw your support behind events to raise awareness and dollars for programs supporting EB families, developing better EB treatments or researching to find a cure. Here are some of the events that we have heard about going on across the country. You can do your part to helping to spread the word about these and any other events you should hear about, and if you would, please send our way any info about other events taking place during EB Awareness Week in your community. Thanks!



  • EB Resource “RT for EB” Tweet-a-Thon (Online only)
    Starting at 8 a.m. on Friday, October 25, we will be tweeting every hour as part of a 24-hour Twitter marathon designed to educate others about EB and encourage our followers and hopefully THEIR followers to spread the message across the twitterverse. The marathon concludes during the 7 a.m. hour on Saturday, October 26 but don’t forget – EB Awareness Week runs through Thursday, Oct. 31, so don’t let our 24-hour campaign stop you from RT’ing long after we’re done! Keep spreading the word and follow us on Twitter at
  • ACTion for Jackson 2013 (New York, NY)
    The Jackson Gabriel Silver Foundation ( hosts its fourth annual benefit from 6:30 p.m. to 9 p.m. Friday, October 25 at Christie’s, 20 Rockefeller Plaza in NYC. Evening will include cocktails, appetizers and an auction, with Christie’s 19th Century Paintings and Prints on display. Tickets start at $185. Proceeds from the event benefit JGSF’s research fundraising efforts which support promising therapies being developed across the country to treat and cure EB. For more information about the event or to buy tickets, go to
  • Gourmet Cupboard Fundraiser (Nationwide)
    The Gourmet Cupboard continues its month-long October benefit for DebRA of America during EB Awareness Week and through Thursday, October 31. For every mix purchased from its online store, with mixes ranging from desserts to chili, the company will donate $1.50 each. Visitors must be sure to order through DebRA’s page at Bookmark it and start browsing! After all, holidays are coming…
  • Merinda Mae Fundraiser (Hartivlle, OH)
    Stop by the Merinda Mae Children’s Boutique, Hartville MarketPlace at 1289 Edison St. NW, during National EB Awareness Week and help support DebRA of America programs and services. Merinda Mae will donate all profits from Friday, October 25 through Thursday, October 31 to DebRA. For more info, email
  • EB Awareness Walk-A-Thon (Batesville, MS)
    Sign up to participate in this benefit walk to be held along the walking trail of Batesville Trussell Park on Hwy. 35N and scheduled to start at 9:30 a.m. on Saturday, October 26. All proceeds go toward DebRA of America. For more info, email


  • East Coast Premiere of “What Were We Talking About?” (Spring Lake, NJ)
    Take in an original play by the Wyoming Magnolias, founders of Magnolia Productions, as they put on this stage show in support of the EB community at Spring Lake Community Theatre, 300 Madison Ave. Shows are scheduled Saturday, October 26 and Sunday, October 27, at 7:30 p.m. and 3 p.m. respectively, with all proceeds being donated to DebRA of America. For more info, click here.



45 Days to EB Awareness Week

It’s hard to believe that EB Awareness Week is just around the corner, only 45 days away.

For those of you who are already deep into the planning stages of your fundraisers or awareness events in your community, please reach out to others here in the EB Resource forum or at your preferred EB organization for any guidance or support. Some groups, like DebRA of America for example, have pages on their website devoted to carrying out a fundraiser in their organization’s name, and other groups may offer helpful kits or fundraiser advice. You just have to ask to see what resources may be available to help make your event a success.

As this very relevant nationally designated week approaches, we wanted to take this time to remind you of various ways you can make a difference for EB Awareness Week, whether or not you’re planning or hosting your own event.

  • Many network TV affiliates and metropolitan newspapers are not likely to be familiar with EB Awareness Week. Reach out to local broadcasters and newspapers columnists in the community. Shed light on the subject with people who have a forum to share with others, and you just might inspire them to start talking about it through their own channels.
  • If you have a child or have close family or friends that are enrolled in an area school, consider reaching out to the school to make them aware of this still rarely known disease and what EB Awareness Week is all about, and encourage them to get involved in some way as a school or class project.
  • Spread the word about EB Awareness week to members of the clubs, networking organizations and other groups that you associate with. Many of these will be looking for opportunities to take part in some kind of community project or fundraiser campaign. Put a face to the disease by sharing some of the stories available on blogs like ours or at organization websites including DebRA’s.
  • Reach out to good friends who own area businesses and let them know about EB Awareness Week including restaurateurs, shop owners and service providers, and encourage them to do something on their own to raise funds and lend a hand. For example, you might suggest to a local restaurant owner that they have a particular night where a portion of proceeds benefits one of the EB-focused organizations or if there is an EB family in the vicinity, where those proceeds go directly to them.
  • Sometimes, I’m sure it can feel like you have 101 different social media accounts to worry about but in the case of EB Awareness Week, this is your chance to put whatever ones you have to work. Use all of the different platforms you’re involved with – whether it’s LinkedIn, Pinterest, MySpace or the more prevalent ones such as Google+, Facebook and Twitter – and take that week to introduce facts about EB, statistics, important organizations or studies people should know about. This can be a great time to use social media as a tool that can truly educate and inspire. And it’s already in your hands!

Community Sound Bites

Our EB Resource Facebook community can be a great resource for sharing suggestions and offering feedback on a number of topics that impact EB families directly. We recently listened in to hear what people are talking about. This is just a small sample. We encourage you to visit our Facebook page regularly to make your own voice heard and contribute.

** 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.

  • When we learn about vendors offering to donate a portion or all of their profits for a particular item to EB organizations, we do our best to get the word out to others so they have an opportunity to evaluate and support them if they so choose. Last month, we told our Facebook friends about Valley Vintage Scents and their handcrafted lockets for which they donate 30% of all profits to EB-related causes. One of our members Kathleen Gravers Cornell was kind enough to share her own consumer experience as a courtesy to other members: “Great lockets and very reasonably priced…While it didn’t really have much of a scent, I was very happy with the locket. Nice workmanship and detail.”
  • The Facebook community is also a great place to keep people informed when there is news or resources that members should know about. When we reminded everyone in May that EB Awareness Week was just five months away, the team at DebRA chimed in: “Everyone is invited to join our virtual Facebook event here: – and if you’re planning on hosting a DebRA local event to spread EB awareness, please email and let us know so we can send you materials.” In April, we brought up the topic of the financial toll that EB can take on families and DebRA’s executive director Brett Kopelan took the opportunity to reach out to our community’s members to explain the registry’s role in calculating these costs: “One of the reasons we, DebRA of America, created the EB Care registry was to be able to measure the true burden of care of living with EB. We wanted to know the pharmacoeconomics as well as the financial burden placed on families. It is important that all EB families sign up for the registry and enter as much data as you possibly can.” When we promoted a group of springtime EB events in a May post, our friend Shawn Ripps Tavani made sure that we didn’t miss one: “Don’t forget about Butterfly Wishes for Ellie in Atlanta, GA.”
  • Sometimes our community can be a sounding board for members to share news about other families in need or other inquiries. Earlier this spring, community member Rochi Orbegoso Pea shared news about one family’s critical circumstances: “I just posted a plea to help 6-year-old Araianita, she needs esophageal stenosis surgery and her family is fundraising to bring her from South America to Ohio. Please let me know if you can help.”
  • Our members can be very generous and not only step forward to offer supplies they don’t need or volunteer to help out in some way but they frequently offer details about their own experiences to shed light on what may or may not work in different scenarios. In April, when we asked families about reaching out to their own schools to enlighten them about EB, Sally Contreras Mata shared her own experience: “Best thing I have ever done when it came to school was set up a “meet & greet” a few days before school started with the teacher, my daughter and I. All taking place in the classroom my daughter will be for the year. This way, she could pick her desk and be comfortable the first day in school…If my daughter’s anxiety level is diminished and she feels at ease then everything else falls into place!”

We know how busy we can all get between work, other outside commitments and some much-needed downtime and recreation, so when our members take a few moments to leave a message in the Facebook forum for others to learn from or to initiate a conversation, that means a lot to us. We hope that you’ll continue to visit the EB Resource community daily and jump into the discussions, sharing your thoughts along the way. We’d love to hear from you and so would the other members. So, thanks in advance for the conversations to come!

EB Awareness Week Is Here!

Please share with us any events you know of for EB Awareness Week.

Each year, Oct. 25 to 31 marks EB Awareness Week both here in the U.S. as well as internationally. It is an opportunity for those who are personally impacted by EB and those who work closely with the individuals and families affected to make it their mission to educate the general population about EB. This has also become a popular time of year for many EB-focused organizations and families to host their own fundraisers and awareness events in their communities. (Click here for more of a background about EB Awareness Week.)

Last week, we told you about what to expect from this year’s Tweet-a-thon (which we’ll remind you of in a moment), but we wanted to take this time to let you know about fundraisers and other happenings across the U.S. that will be taking place. We hope you will forward this information on to your friends and family to continue spreading the word. And we encourage you to support any of these events for which it may be possible – whether it’s directly getting involved or just sharing the information with your own Facebook friends and Twitter followers who might be located in the area where the event’s being held.

So here are some events we know that are occurring during EB Awareness Week, as well as shortly after, in conjunction with this important time of year.

  • EB Resource Annual Tweet-a-Thon (Online only)
    Starting at 8 a.m. on Thursday, Oct. 25, we will be tweeting every hour as part of a 24-hour Twitter marathon designed to educate others about EB and encourage our followers and hopefully THEIR followers to spread the message across the twitterverse. The marathon concludes during the 7 a.m. hour on Friday, Oct. 26. In addition to raising awareness, we are out to raise funds for DebRA of America, but we need our followers’ help. For each tweet and re-tweet that includes the designated hashtag “#ebfund” during that 24-hour period, Hollister Wound Care will donate $1 to DebRA up to a maximum $2,500 donation. Be sure to bookmark and follow us @EBResource.
  • Action for Jackson 2012 (New York, NY)
    The Jackson Gabriel Silver Foundation ( is hosting its annual benefit on Friday, Oct. 26 from 6:30 to 9 p.m. at Christie’s, 20 Rockefeller Plaza in NYC. Tickets start at $175. Proceeds from the event will go toward JGSF’s research fundraising efforts, which support promising therapies being developed across the country to treat and cure EB. For more information about the event or to purchase tickets, visit If you have any other questions, you can email co-founder Jamie Silver at or contact her by phone at 212-844-9369.
  • Honoring an EB Soldier (Arcadia, FL)
    Ben and Sirena Wiley of Central Florida recently reached out to their community and the general public to create an online fundraiser in honor of their son Ben Jr., who is diagnosed with epidermolysis bullosa and whose first birthday falls within EB Awareness Week. The online fundraiser, designed to raise funds to support the family’s medical bills and wound care supplies, has since wrapped up; however, the couple will be hosting an EB Awareness event Saturday, Oct. 27 from noon until 4 p.m. at the Elks Lodge in Arcadia. The event is slated to include fun games and activities for kids of all ages, a bounce house, cake and ice cream, dinners available for purchase and a silent auction from which all proceeds will be donated to DebRA of America. For additional information about the event, contact the Wileys at or 863-990-9356.
  • New Baden Park EB Awareness Walk (New Baden, IL)
    The community of New Baden, IL, continues its annual tradition of a Walk for EB event at New Baden Park as part of EB Awareness Week and takes place Saturday, Oct. 27 at 3:30 p.m. T-shirts will be sold at the event with these proceeds benefiting DebRA of America. For more information about this year’s event, contact Jennifer McCaughtry at or by phone at 618-954-8439.
  • Tropical Smoothie Café Fundraisers (Henderson and Las Vegas, NV)
    Two Nevada locations of Tropical Smoothies will be taking part in this year’s EB Awareness Week. Customers will have opportunities to donate Thursday, Oct. 25, through Wednesday, Oct. 31, at the Henderson café located at 76 W. Horizon Ridge Pkwy. and 95 Fwy. as well as at the Las Vegas café located at 3390 Novat St. at Cheyenne and I-215 West. Each location will also be hosting fundraiser events on Monday, Oct. 29, for which the two cafes will donate a percentage of their sales to Pioneering Unique Cures for Kids (PUCK). For more information about these fundraisers, contact co-owner Michelle Schriver by email at or by phone at 702-529-0852
  • EB-Focused groups at the 2012 ING NYC Marathon (New York, NY)
    We are already aware of two groups – DebRA of America and Jackson Gabriel Silver Foundation – participating as community charities in this year’s popular New York City marathon, which takes participants through all five boroughs of the city and is being held Sunday, Nov. 4. Click here for more information about Team DEBRA. Proceeds to this team will go toward DebRA’s various efforts to support EB patients and their families. Also, the Jackson Gabriel Silver Foundation is taking part in this year’s marathon with its own team. If you are interested in joining or contributing to the JGSF team, contact Jamie Silver at All funds raised by the JGSF team will go toward the organization’s EB research funding initiatives. For more information about the race itself, visit

If you know of any other events, please share that info with all of us here, on our Facebook page or email us at And good luck to any of you who may be hosting events in your own schools, workplaces or neighborhoods!