Posts belonging to Category 'Events and Fundraisers'

Fall Fundraisers & EB Awareness

It’s hard to believe that EB Awareness Week is only two months away. Have you begun making plans to initiate any fundraisers or EB awareness events in your community for later this year? We’ve rounded up the list so far of events taking place both during this special national awareness week, and also during the remainder of the year.

If you know of any additional events being held this fall or early winter, please let us know. You can email me at or let us know in the comments on our blog or Facebook and Twitter pages. We appreciate you helping us spread the word about the great ways people are educating others about EB.

Currently, these are some events to be aware of taking place later this year.

  • First Annual Butterfly 5K (Lore City, OH)
    Those in the Buckeye State can come out for the debut of this special 5K event in honor of Hannah Blake, which starts at 10 a.m. Saturday, Sept. 20 in Salt Fork State Park, located at 14755 Cadiz Rd. This promises to be a fun family event with music, food, raffles and a 5K open to runners, walkers, as well as those with strollers and wheelchairs, too. For more information, click on this event link.
  • 16th Annual DebRA of America Benefit (New York, NY)
    This event to celebrate the official kickoff of National EB Awareness Week is scheduled for 7:30 p.m. to 10:30 p.m. Wednesday, Oct. 22 at the B.B. King Blues Club, located at 257 W. 42nd St. The evening will feature casino games with proceeds to benefit the organization’s various programs. For more information, click on this event link.
  • TCS New York City Marathon, Team DebRA (New York, NY)
    Show your support by raising funds or participating in the world’s largest marathon as part of Team DebRA. It will take place on Sunday, Nov. 2. All proceeds benefit DebRA of America. Kudos to this year’s list of participants so far – click here for a peek at that list. For more information, click on this event link.

Gearing up for Patient Care Conference

It’s hard to believe that DebRA’s 2014 Patient Care Conference is only two weeks away! The PCC is such a significant event for those in the EB community, and it offers families and those diagnosed with EB a chance to meet and learn from one another as well as interact with and hear from EB advocates and respected members of the medical field discuss the latest treatment and research news. Although registration is closed for the event, there is still time to get prepared for this upcoming event which only takes place every other year.

This year’s event is scheduled for Wednesday, July 30 through Saturday, August 2 at the Gaylord Opryland Resort & Convention Center in Nashville. The 2014 agenda features a variety of speakers who will talk about such topics as bone health, oral care, genetic testing, blood and marrow transplantation and much more. For a glimpse at this year’s preliminary agenda, click here.

There will also be an area for guests to meet exhibitors, such as bandage manufacturers like Hollister Wound Care and others. I encourage you to stop by the exhibitor area. It can also be a very valuable use of your time. It’s a great opportunity to pick up samples of products you may have heard of but not yet tried, or to ask questions and become more educated about products you’re already using or considering.

As in past years, DebRA organizers have thought ahead and set up some wonderful activities for the children to take part in while parents are attending presentations with well-stockedl playrooms onsite. Kids will have the chance to play together and enjoy games, movies, toys, books, arts and crafts right there near the main conference area. There will be volunteers overseeing the playroom at all times though kids under five years old will need to be accompanied by an adult. At every PCC there is a unique family event planned, and this year it’s a field trip on the General Jackson Showboat to take place Thursday, July 31 from 1 p.m. to 6 p.m.

Anyone who has ever visited a Gaylord hotel knows that these are unbelievably beautiful and large hotels with such a lush and comfortable environment and beautiful indoor botanical gardens, cascading waterfalls, and plenty of places to stop by and see onsite, so it promises to be a fun event for all.

I’m excited about this year’s event and getting a chance to meet everyone, to see some familiar faces, and become acquainted with some new members of the EB community. And I’ll be sharing some thoughts about this year’s event later on this summer but if you’re unable to attend, you can keep up with it daily on a variety of social media including DebRA’s Twitter and Facebook pages. And if you are going, they’ve asked any of us who might be doing some tweeting or Facebook posts of our own to use the hashtags #debraPCC and #EBawareness.

For more information about this year’s event, you can visit the main PCC page at If you see me there, be sure to stop by and say hi. I look forward to seeing everybody soon!

Upcoming EB Events

We’re not even two weeks into the new year and already we’re raring to go to promote any future EB awareness events or fundraisers that we’ve learned about. The following events are currently listed on the DebRA website, where additional information can be found on either the local events page or DebRA-hosted events page. Proceeds from each of these events will go toward DebRA’s various programs and services to support EB families as well as research for treatments and a cure.

If you know of any other events taking place during the first half of 2014 to benefit any EB-focused organization, EB support program or individual or family directly impacted by EB, please let us know. You can email or leave a comment on the blog or at Facebook or Twitter. And we’ll be sure to help spread the word, too!

  • “TEAM DEBRA” at the Florida Disney Half Marathon (Orlando, FL)
    This year, there will be the debut of a TEAM DebRA taking part in the event held Saturday, January 11 at Walt Disney World Epcot Center.
  • Cure 4 Cole 2 (Jacksonville Beach, FL)
    This two-day musical event takes place Saturday, January 25 and Sunday, January 26 at the Landshark Café, 1728 3rd St. N. This second annual event features performances from a dozen bands, including Celinda Pink and The Music Factory and The Drifters, and also includes an auction of donated musical instruments.
  • 3rd Annual Rafi’s Run Celebrating Rafi Kopelan (New York, NY)
    This popular DebRA of America fundraiser is scheduled for Sunday, March. 9 at 10 a.m. in Riverside Park, 103rd St. Additional details about registration and other happenings at the benefit will be posted soon.
  • “TEAM DEBRA” at the NYC Half Marathon (New York, NY)
    Supporters can inquire about participating, sponsoring or coming out to volunteer or cheer on those taking part in this unique 13.1 mile trek through the Big Apple on Sunday, March 16.
  • “TEAM DEBRA” at the 16th Annual Flying Pig Marathon (Cincinnati, OH)
    This race, scheduled for Saturday, May 3 and Sunday, May 4, is a qualifying race for the Boston Marathon and offers over 10 events including the marathon, half-marathon, 10K, 5K, 4-person relay, kids’ events and more.

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.



Q&A with DebRA Executive Director Brett Kopelan Part II

Last week, we began featuring part I of a two-part interview with DebRA of America executive director Brett Kopelan, who recently chatted with EB Resource as the organization was undergoing a relocation of its main NYC office. In part I, he shared how he was first introduced to the organization as an EB parent. In the conclusion of our interview, the executive director discusses specifically some initiatives his organization is currently working on to help raise awareness about the disorder.


EB Resource (EBR): What is DebRA of America’s main focus?

Brett Kopelan (Brett): Well our main focus is to fund the research that will eventually find a cure or treatment for this disease. I like to say that we are dedicated to easing and eventually eradicating the inherent daily stress of living with EB. But, what separates us from the other organizations is while we support that early-stage research, we are the only organization that has programs and services for the person with EB, the families and the caregivers. For instance, through our Wound Care Clearing House we give out free bandages to people who don’t have insurance coverage or have exhausted their coverage. We have a family crisis fund that helps offset the incredibly expensive cost of the disorder. People can apply for a financial grant to help with doctor and prescription co-pays, medical equipment or anything related to the care of an EB person. We’ve got our Patient Care Conference that runs every other year and that gives families the opportunities to not only socialize with each other but also meet and listen to the experts in clinical care and get updates on the status of research. We don’t charge any money for people to come and each year, more and more people do. Because of EB’s burden of care financially, in many cases this conference becomes the family vacation. And what’s really important is that people can be themselves without having to explain anything. Believe me, that is a relief. Not having to explain the open wounds or say ‘no, she wasn’t burnt in a fire’ is nice for a change. Anyway, there’s our New Family Advocate program where we send a box of supplies and important information and an experienced caregiver to train parents in the care of the new infant and on the use of the supplies. We also recently launched the Smile Fund. It’s a wish-granting program to fulfill small wishes for someone with EB on a monthly basis to bring a smile to their face, whether it’s an iPad or concert tickets. And as the need arises, we’ll keep developing new programs. For what’s considered a smaller organization, we provide a lot of services that are very practical and proactive, and probably our most used program is our nurse educator. People can call or email her and she’ll respond to answer their questions. We’ll be expanding that program soon.

Strategically, we have to bring a larger audience into the EB community and we’re going to do that by buying advertising space and start showing people what this disorder is. If our metrics are right, and we’ve been very conservative in this regard, it is our hope that we might be able to get 25,000 new active donors through advertising. It’s important to go in this direction for so many reasons, not just from a revenue side. The awareness quotient is incredibly important. For instance, last year, there were actually questions about EB on the medical boards, which was a huge thing because all of a sudden you may attract a greater number of younger researchers and clinicians who will gain an interest in it just by being exposed to it. That leads to more research, potential treatments and different ways of doing care. So it’s not just about raising more money.


EBR: Many of us in the EB community hear about multiple EB-focused organizations out there, all operating independently to serve the community and wonder if there is any collaboration taking place among these various organizations. Would you speak on that subject?

Brett: Some of the bigger organizations do collaborate in one way or another. I speak regularly with EBMRF and with JGSF to talk about various strategies and events. There are organizations that are solely focused on supporting early-stage research and other organizations that try to help the community and those with EB as best they can. There are a lot of other good organizations out there, but there can be pros and cons about having multiple organizations. The biggest difference with our organization from others is we have a scientific advisory board that helps us determine the best research to fund both nationally and internationally. We’re breaking up our scientific advisory board into a clinical sub-group , a basic science subgroup and an international subgroup to allow for the most up to date trends in care, in research projects and priorities. The clinical subgroup will allow us to be the only organization that can actually provide quality medical information to those with EB. With the rise of social media there is a plethora of care strategies being passed around that may not be safe.  I want people to be able to point to DebRA as providing not only the programs and services but also information from the professionals that specialize in certain areas of care, for instance pain management.

As more people flock to social media, there are a greater number of smaller organizations popping up that really do want to help but without knowing it may actually prove detrimental. For instance, let’s say a new family goes to Facebook and sees 17 organizations. Where do they go? How do they know who to call first? Where will they get the right information and get into a system that gathers information that helps the overall cause? Some of the first questions the pharmaceutical companies or early-stage researchers always ask are ‘what is the prevalence of EB’ and ‘what is the incidence and burden of care,’ and the only way that we can accurately put this information together is by getting a great hold of the market. I think that’s where the problem of having multiple organizations comes in, that you end up losing some of the critical information that’s out there and that pharmaceutical and biotechnology companies are asking for. As way of example, if more than one organization distributes wound care supplies, we are unable to fully calculate the cost of having this disorder. DebRA uses the actual cost of care when advocating with the government about reimbursement rates. When a market becomes fragmented it leads to inefficiency. As another example, if all of these organizations ask the same group of people for money, while the overall amount of giving doesn’t change, the level of effect of that one dollar does. Giving thirty three cents to three different organzations is not as effective as giving one dollar to one. That same dollar can have a greater impact on the community. Mind you, I am not saying there should only be DebRA. I am saying that too many organizations will hurt the overall cause.


EBR: Are there any areas where we may be seeing other opportunities from possibly outlying influencers that could have a potential positive impact in helping the EB community in some way?

Brett: One of the other things I do is speak at events, and I am on the board of directors of the National Organization for Rare Disorders. I got on there to help give DebRA an avenue for advocacy in Washington D.C., and a direct line of communication. Because of my work at NORD, DebRA was able to get EB listed with the Social Security Administration’s compassionate allowance program.  This allows people with a diagnosis of EB to get to the front of the line for an accelerated review when applying for SSI or SSDI. My next goal is to get Medicare and Medicaid waiver programs in place for those with this disorder. We are planning a day on the hill in D.C. in front of Senators and Congressional representatives to talk about the reimbursement issues of the bandages. NORD’s work was instrumental in getting language passed in recent legislation that allows for accelerated approval of orphan drugs and clinical trials. I have also worked with the FDA in setting up a patient review panel for upcoming clinical trials. I would say there are a lot of things going on that are going to have a huge impact on the EB community.


EBR: How has DebRA worked toward getting more media awareness for its efforts to support EB families and early-stage research?

Brett: There’s always media outreach and efforts to get media coverage around our events. But media will cover what it wants to cover, so it can be very difficult to predict. I have a director of communications and events who reaches out to media outlets like ABC and NBC. We do press releases and were recently picked up by over 350 media outlets. I think though the amount of coverage DebRA and EB get will increase once our advertising initiatives begin, because media picks up stories when there’s momentum and there is research momentum being built up. Once we’ll be able to effectively tell that story through advertising and through local events, I think more national media will pickup our story. The more important part of a PR campaign is to be able to do something with the results from that campaign. So, one of the things we’re doing is a complete system implementation here that will allow us to capture data, stories and media momentum and act on it. We’re building an infrastructure here at DebRA that is going to allow us to capitalize on a lot of the media work we’ve been doing.


EBR: Are there any campaigns or new partnerships you can share with our community?

Brett: From a strategic point of view, we are launching a new website soon that is going to be more image-intensive and video heavy. I am in conversations with some large advertising firms about taking DebRA on as a pro bono client as well. We’re in the final stages of developing the video for the thirty-second commercial. We’ve gotten a pretty famous singer to do voice-overs for it. We’re developing a much more robust direct mail program. We’ve been building infrastructure and stress testing it slowly to make sure that when we go out and allocate enough resources that will allow us to bring in new donors that we can capture and capitalize on all of it. It’s been a successful couple of years but I think with people like Leslie heading up our board of trustees and marshaling the resources there, it’s only going to become more successful.

I’ve been out there talking to some of the larger Fortune 500 companies, but it can be difficult to get a large national company behind you because causes like community betterment seems to be where some allocate their charitable giving allocations. With that said, the Rite Aid Foundation has given us some money. There’s a group of 40 Walmart stores putting together a local event for us, so the advertising component will allow corporate organizations to see that this is a disorder worth supporting and given the breadth of stuff that we do, they’ll say that DebRA is also an organization worth supporting, too.


Fall EB Events and Fundraisers

With EB Awareness Week not far off in the distance, we thought it was a good time to share news of any EB events we have learned of taking place later this fall. If you know of any others, please feel free to let us know here on the blog page or in our Facebook community so we can help support these individuals and families planning them. Thank you!

You may also email me any of the event details at As always, we’ll do our part to help get the word out to others about it.

  • Wicked Hot Run 5K Walk/Run (Murrells Inlet, SC)
    This event is scheduled for Sunday, Sept. 8 at Huntington Beach State Park, located at 16148 Ocean Hwy. The family run offers participants three types of terrain including forest trails, paved roads and sand, with a portion of proceeds to benefit DebRA of America. For more information, click on this event link.
  • MW Foundation and DebRA Tennis Pro-Am (Queens, NY)
    The inaugural MW Foundation event is scheduled for Wednesday, Aug. 28 at West Side Tennis Club, located at 1 Tennis Place. Proceeds from this inaugural fundraiser featuring former #1 tennis player in the world Mats Wilander will benefit DebRA of America. During the event, participants will get to play with former and current tennis pros and watch a professional exhibition match. For more information, click on this event link.
  • 15th Annual DebRA of America Benefit at MOMA (New York, NY)
    This event kicks off National EB Awareness Week on Thursday, Oct. 24 and features silent and live auctions, live music and a private viewing of the 5th Floor painting and sculpture galleries where Van Gogh’s The Starry Night and hundreds of other famous paintings hang. Proceeds benefit DebRA of America. For more information, click on this event link.
  • 2013 Medtronic Twin Cities Marathon Weekend (Minneapolis, MN)
    The Jackson Gabriel Silver Foundation is currently recruiting for its team as part of a weekend-long array of events Friday through Sunday, Oct. 4-6 including a marathon, 10-mile, 10K and 5K. Team JGSF will be running to support the work of University of Minnesota EB researcher Dr. Jakub Tolar. If you would like take part as a member of the team or get involved in some way, email Proceeds will benefit DebRA. For more information about this and other events for the organization, click on this event link.
  • Frontiers Day Fundraiser (Paris, AR)
    This event coincides with the 33rd Annual Mt. Magazine Frontier Days Festival held in October and features a Civil War re-enactment. The EB event will be held Saturday, Oct. 5 at the Logan County Fairgrounds, 301 W. Walnut. There will be a DebRA booth with information about EB and raffles, giveaways and a special silent auction of handcrafted items. For additional information about this year’s event or to donate an item, email Cindi Hunter at Proceeds benefit DebRA. For more information, click on this event link.
  • “What Were We Talking About?” East Coast Premiere (Spring Lake, NJ)
    This original play written by Linda Stoval, Gretchen Wheeler, Gale Alexander and Vickie Cawthra leaves its Wyoming stomping grounds to make its east coast debut at Spring Lake Community Theatre Saturday and Sunday, Oct. 26-27. All proceeds benefit DebRA of America. To purchase tickets, go to this link. For more information, click on this event link.
  • ING NYC Marathon, Team DebRA (New York, NY)
    Support or run as a part of a team raising funds to support the EB-focused organization in the world’s largest marathon Sunday, Nov. 3. All proceeds benefit DebRA of America. To check out who is participating in the campaign or to donate, go to this link. For more information, click on this event link.

Summer and Fall EB Events

Last week was a very busy week in the EB community. Many of the final springtime fundraisers took place including Jogging for Jonah, Butterfly Wishes for Ellie, Love for Lucas and the sixth annual Walk for EB in Cincinnati. As summer approaches, we thought it would be a good time to highlight those events that we have learned about taking place later this year, so far, and hopefully inspire others to coordinate something in their own communities.

If you hear about any other events or are planning one yourself, please send us all of the details. You can email me at We’ll do our part to help spread the word here at the blog and via Twitter and Facebook.

  • Ayden Lee’s 3rd Birthday Party (Niles, OH)
    This special Elmo-themed birthday celebration is being held on Saturday, June 15. The event will take place at Waddell Park, 1000 W. Park Av. Guests are asked to bring a covered dish and drinks, as well as wear the color red in honor of Ayden’s best friend Jaxon who has EB. In lieu of birthday gifts, donations in Jaxon’s name are requested at to benefit families supported through DebRA of America. For more information, click on this event link.
  • MW Foundation and DebRA Tennis Pro-Am (Queens, NY)
    Details for this sporting event are still being worked out but the scheduled date is Wednesday, August 28 and plans are for West Side Tennis Club, located at 1 Tennis Place, to host the event. Proceeds from this inaugural fundraiser will benefit DebRA of America. For more information, click on this event link and scroll halfway down the page.
  • 2013 Medtronic Twin Cities Marathon Weekend (Minneapolis, MN)
    The Jackson Gabriel Silver Foundation is currently recruiting for its team as part of a weekend-long array of events Friday through Sunday, October 4-6 including a marathon, 10-mile, 10K and 5K. Team JGSF will be running to support the work of University of Minnesota EB researcher Dr. Jakub Tolar. If you would like take part as a member of the team or get involved in some way, email Proceeds will benefit DebRA. For more information about this and other events for the organization, click on this event link.
  • Frontiers Day Fundraiser (Paris, AR)
    This event coincides with the 33rd Annual Mt. Magazine Frontier Days Festival held in October, featuring its first ever Civil War re-enactment. The EB event will be held Saturday, October 5 at the Logan County Fairgrounds, 301 W. Walnut. There will be a DebRA booth with information about EB and raffles, giveaways and a special silent auction of handcrafted items. You can get additional information about this year’s event or how to donate an item by emailing Cindi Hunter at Proceeds will benefit DebRA. For more information, click on this event link.

Springtime Events

Keep up with the latest on EB awareness and fundraising events.

We have a busy season ahead for EB families to support a number of special events to raise awareness and EB research dollars. Here are just some of the events we have learned are coming up. In addition to these events listed below, there are also several marathons going on throughout the year — spring included — where teams assemble to participate and run on behalf of EB-focused organizations.

Even if you can’t take part in a marathon, you can support these teams in other ways. Check out DebRA of America’s latest list of EB fundraisers and awareness across the country by clicking here and see if there’s a marathon in your home state where you might be able to support a team racing to honor EB families.

And if you know of other events, be sure to share details here on the blog or on our Facebook page, and always keep us in the loop by emailing us at about future events. We’d love to do our part to help spread the word.

  • Rafi’s Run (New York City, NY): This second annual event is being held Sunday, March 10, 2013. The 5K run/walk event that celebrates 6-year-old Rafi Kopelan starts at 10 a.m. and is being held at Riverside Park at 103rd St. on the Upper West Side of NYC. Proceeds from the event will benefit DebRA of America. For more information, click on this event link.
  • Tripp Roth Softball Blowout (Hammond, LA): This event, which honors the memory of Tripp Roth, offers a fun weekend of events for the whole family with food, music, raffles, bounce houses, auctions and more. Men and co-ed teams are invited to sign up. Entry fee is $300. The event takes place at North Oak Park, 2008 N. Oak St., Hammond, LA., and runs Friday through Sunday, March 22-24, 2013. For more information about this DebRA fundraiser, click here to visit the event’s Facebook page.
  • Jogging for Jonah 5K & Fun Run (Clemmons, NC): Those looking to lace up the sneakers can take part in this second annual DebRA event being held Saturday, May 4, 2013. Details are still being finalized, but the event that celebrates 4-year-old Jonah Williams will take place at Tanglewood Park, 4061 Clemmons Rd., Clemmons, NC. For more information as it becomes available, click here for the event listing on the DebRA of America site.
  • Butterfly Wishes for Ellie (Atlanta, GA): This year’s event will be the seventh annual benefit in honor of Ellie Tavani, who turns seven this April. The DebRA fundraiser is being held at the Park Tavern, 500 10th St. N.E., Atlanta Thursday, May 9, 2013. For more information, click here to visit the event website
  • Love for Lucas (Avon Lake, OH): Last year, the event was first launched in memory of Lucas Patrick Harman, who passed away at just 5 weeks old. The bowling event that raised $30,000 for DebRA of America will return to Spevock’s Nautical Lanes, 184 Miller Road, Avon Lake, OH, on Saturday, May 11, 2013. Tickets are $25 for unlimited bowling, food and soft drinks. For more details about the other many activities planned that evening, including a silent auction, hourly raffles and a T-shirt sale, click here to visit the event website.



Tweeting to Support EB Families

Follow along on #ebfund next week for our annual Tweet-a-Thon to raise EB awareness and funds!

We’re excited to once again launch our annual Tweet-a-Thon in honor of the nationally and internationally-recognized EB Awareness Week. This will be our third consecutive year doing the campaign, and we wanted to make certain that members of our online community were aware in advance of what to expect and how to get involved.

Each year, we like to take this important week designed to raise the general public’s awareness of EB to not only educate but also to give everyone a chance to give back in a very easy and fun way. For 24 hours straight, we will be tweeting every hour about EB in the hopes that our followers will re-tweet our updates to their own group of followers. In this way, we can all work together to reach as great a number of people as possible, and by the end of that 24 hours, we will know that there are more people familiar with epidermolysis bullosa than when the day started.

But the Tweet-a-thon has a very real reward element attached, too. For every tweet and retweet during that 24 hours using our designated hashtag #ebfund, Hollister Wound Care will donate a dollar — up to $2,500 — to DebRA of America in support of its tremendous work with individuals and families facing EB each day.

So think about it – if you re-tweeted at least 20 of our two-dozen messages to your own Twitter followers and another 49 of our Twitter followers did the very same thing, that would be $1,000 right there alone going to DebRA! Just imagine if you can persuade some of your own followers to hop on the campaign with us and forward to their group of followers.

Here is what you need to know to help:

  • Yes, you need to be on Twitter to participate. It's free to join. Open your account today here.
  • Follow us @EBResource and consider bookmarking our Twitter page. You may even want to put a little reminder chime on your phone for the start date and time of the campaign — or maybe even every hour on the hour to remind you to visit our page often!
  • Searching for the hashtag #ebfund will also call up the posts.
  • On Thursday, Oct. 25 at 8 a.m. EDT, we will tweet once every hour for 24 hours straight as we lay out the background story of EB, a Twitter campaign that we’re calling, “EB: A Day in the Life.”
  • Anytime between that Thursday morning and the 7 a.m. hour when we’ll wrap up the campaign on Friday, Oct. 26, you can help us by re-tweeting (RT) our updates to your followers or sending your own tweets to them. Please make sure to use the designated hashtag #ebfund when you do.

Each year, we enjoy tackling the not-so-easy task of telling a story about EB to those unfamiliar with it, because we know that you’ll be there with us every step of the way. I hope we can count on your support again this year and that of your friends with whom you share this blog link.

And thanks so much in advance for all of your help!

DEBRA International Congress 2012

Last month, I had an opportunity to attend DEBRA International’s annual meeting of DEBRA groups from countries all around the world. DEBRA Canada and Canada’s Hospital for Sick Children (“Sick Kids”) served as hosts for the DEBRA International Congress 2012, which ran from Sept. 13-16, 2012, at Toronto’s Fairmont Royal York Hotel. It was a fascinating and educational experience to be able to interact with a mix of physicians, nurses, researchers and families representing 25 countries, all coming together to share information and collaborate on common goals for the benefit of EB families.

DEBRA International made it known at the event that one of its top priorities is to encourage collaboration among the various DEBRA organizations worldwide to define and establish EB care guidelines in a number of clinical areas to be published on its website as well as within medical journals throughout the world. Their goal is for these guidelines to be made available to physicians everywhere to better understand the EB patient and best serve these patients and their families. Once created, the guidelines will be made available in as many languages as possible to serve medical communities across the world. But as with any set of guidelines, creating these take time. There are currently efforts in place to establish wound care, nutrition and pain management guidelines, and dental guidelines were just formally published by the group last month. Click here for the link to DEBRA International’s dental guidelines for EB patients.

This year’s program was broken out in such a way that each day had a different focus. Day One featured segments on EB family topics, including pain management, school issues such as bullying, skin care and nutrition. Day Two concentrated on the various care guidelines that several countries have in development with particular emphasis on the various wound care efforts from Italy, Canada’s Toronto Accord and the UK.

Day Three was all about research and offered a closer look at the EB studies in progress currently as doctors from across the world discussed their work. Dr. Jakub Tolar addressed the congress about his bone marrow transplantation procedure; Dr. Peter Marinkovich introduced his study, gene transfer for human recessive dystrophic EB; Dr. David Woodley discussed protein replacement therapy; Dr. Sarah Atkinson of the UK discussed her siRNA Therapy study; and Dr. Gabriela Petrof also of the UK shared the latest about her clinical trial studying the role of allogeneic fibroblast cell therapy in RDEB patients. During the final day of the conference, Day Four, attendees were able to be part of break-out workshops covering such specialized topics as nursing, nutrition, physical and occupational therapy and psychosocial issues associated with EB.

During the conference, DEBRA International unveiled its newly upgraded website and gave others a chance to educate attendees about their programs. For example, I learned about EB Without Borders, a group of DEBRA organizations from around the world who have joined forces to support EB patients and their families in those parts of the world where there is no DEBRA organization already established. And once again, I had a chance to meet up with the EBCare registry team, a group gathering data to establish an EB database. I learned something new that I was not aware of – that those families like mine who had lost a child previously to EB can also register with the database; it is not solely families currently facing it on a daily basis. Their representatives encouraged all families at any time impacted by EB to get in touch with them to get registered and become part of this valuable international database. The more information they are able to gather, the more thorough and complete picture they can build about EB families – who they are and how they are being impacted by this devastating disease.

All in all, it was an enlightening conference for attendees fortunate enough to take part. I’m happy to be back home from travel time away from the family, but it was educational and very encouraging to get to hear from and meet so many people committed to working together to better understand EB, to improving treatments for EB and to developing a cure.

For more information about this year’s event, check out DEBRA International’s 2012 Congress website at