Growing Support for EB Awareness

Whenever we have the opportunity, we like to share information about upcoming EB awareness events and fundraisers so that our fellow members of the EB community show their support or help spread the word through their own social media channels. Here is a diverse list of events we have learned will be taking place over the next few months, and it involves everything from running to biking to gambling.

  • 2015 New York City Half Marathon (New York, NY)
    Supporters can come out to cheer or donate to TEAM DEBRA taking part in this race event on Sunday, March 15. Runners will take a 13.1 mile tour of The Big Apple, and 100% of TEAM DEBRA's donations raised will go toward DebRA of America's programs and services. For more information about this event, click here.
  • Cycle for a Cure (New York, NY)
    If bicycling is more your interest, a fundraiser is scheduled later this month that will allow participants to take a fun bike ride together, again around New York City. The event starts at 2:30 p.m. Saturday, March 21, at SoulCycle's West 27th St. Studio. Participation is open to cyclists age 18 and over with tickets $50 general admission and $75 VIP. For more information about this event, click here.
  • Dig Up a Cure for EB (Lexington, NC)
    Families can take part in a volleyball tournament with six or more players required per team, with two separate brackets based on skill level, at this event scheduled Saturday, March 21, at North Davidson High School located at 7227 Old U.S. Hwy. 52. For more information about this event, click here and scroll down to one of the North Carolina event entries.
  • What Were We Talking About? An original play (Louisville, KY)
    Those in or near the Louisville, KY-area can come out for a performance of an original play written by the Wyoming Magnolias and being performed at 6 p.m. Saturday, March 21, at Gardenscourt Louisville Seminary, with proceeds to benefit the EB community. For more information about this event, click here.
  • Cyndi's Wish for a Cure (Miss Point, MS)
    Supporters can shop at this garage sale with proceeds benefiting DebRA of America. Event takes place 6 a.m. to noon Saturday, April 11, at 17729 Hwy. 613. For more information about this event, click here.
  • All In for a Cure (New York, NY)
    Poker fans can have some fun and benefit the EB Research Partnership at this debut Texas Hold 'em EB fundraiser 6 p.m. to 10:30 p.m. Thursday, April 23, at the Penn Club. For more information about this event, click here.
  • Flying Pig Races (Cincinnati, OH)
    This series of 10 race events takes place over Saturday and Sunday, May 2-3, featuring a marathon, half-marathon, 10K, 5K, 4-person relay, Beer Series, High School Challenge and Kids's events. For a third consecutive year, DebRA of America has been selected as the official charity partner for this 17th annual benefit and will have a tent set up at the event. For more information about this event, click here.
  • 9th Annual Butterfly Wishes for Ellie (Atlanta, GA)
    This benefit event and silent auction in honor of Ellie Tavani will be held on Thursday, May 7, at The Park Tavern in Midtown Atlanta. Last year's event raised nearly $50,000 for DebRA. For more information about this event, click here and scroll down to the Georgia section.
  • 4th Annual Jogging for Jonah (Clemmons, NC)
    This race event in honor of Jonah Williams is scheduled to start at 8 a.m. Saturday, May 9 at Tanglewood Park. The day will include a 5K race and fun run, as well as a raffle, face painting, inflatables, food and beverages, music and more. Proceeds benefit DebRA of America. For more information about this event, click here and scroll down to one of the North Carolina event entries.

If you know of some future EB awareness events or fundraisers scheduled, please reach out to us at so we can help promote these upcoming benefits in future social media posts or blogs. And many thanks in advance to all of those who have invested their time, energy and resources in coordinating and supporting these events to directly benefit the EB community. We are sending best wishes to all of you for very successful events!

Ways to Support EB Families

Whether you are living with EB every day or know someone who is, there are things we can do to support not only those in our lives impacted by the disease but others and their families, as well.

  • Share, share, share. If you’re on various social media platforms, whether it’s Twitter, Facebook, LinkedIn, Google+ – any of them! – you have an invaluable opportunity to tell people about something they probably aren’t familiar with. Use your reach to educate and seek potential supporters for EB- fundraisers or campaigns.
  • Reach out to your friends facing EB or to organizations. If you want to help do something, the quickest way to get there is to ask. Go directly to the source and find out where there is the most need, and how you might lend a hand.
  • Lend your talents. Perhaps you have a particular skill or resource that could make a difference to a specific family, group of families or even an EB-focused organization. Put out your message to those parties for whom you might be of service and if you’re truly committed to making a difference, consider offering them pro bono or discounted.
  • Rally for fundraisers. Even if a fundraiser is across the country or heck, across the world, there is nothing stopping you from leading a grassroots effort of your own to support that fundraiser. Create your own arm of support in your community and raise funds and awareness for an EB charity you follow. Or still yet, reach out to those fundraiser organizers directly and ask them if there are other needs that they have for their event such as food, drinks or professional services of some kind and offer to provide resources to help them with that specific need.

There are so many ways all of us can support the EB community, even when we are not directly affected. If we maximize our resources to do it, whether we are using our channels of influence to their fullest or directly promoting efforts to grow research dollars or family support, we can do so much collectively. So we encourage you to find you own unique niche for making a difference.

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.



Keys to Successful Fundraising, Part II

Last month, I blogged about tips I’ve gathered along the way while coordinating the Butterfly Benefit Fashion Show and Luncheon. This month, I wanted to offer some general advice for fundraisers and EB Awareness events. I encourage you to look for new ways to reach out to people and share information about EB. I find that once people are introduced to EB, they usually want to know more about what they can do to support those affected.

  • Know what you want to accomplish before you start planning. How large do you really want your event to be? Are you appealing to the masses to simply attend and be present? Or are you planning an event that would benefit from a smaller number of people? Sometimes events that attract a more defined group that is interested in hearing from speakers and learning about the issue can lead to those individuals hatching even more creative ideas to raise EB awareness or dollars as they talk among themselves.
  • Make certain your event suits your goals and vision. You may enjoy golf and want to coordinate your own golf event, but know in advance that a golf tournament can be a truly ambitious undertaking, and often so much money must be invested into putting on the event that the organizations do not benefit as much financially as with a smaller function. If you can get a golf country club to donate the course’s greens fees, go for it. But if raising funds is your main goal, consider a walk or an auction that has the potential to raise a lot of money and typically costs far less. Just make sure if you’re hosting a walk/run that you notify your city beforehand should you need police to block off any streets for participants.
  • Find a local connection to EB before reaching out to area media outlets. It can sometimes be challenging to get the word out about your event, because there may not be an EB family in your community. You should first consider reaching out to these families in a nearby city or elsewhere in the state to see if they’d be willing to be involved and attend the event. You may also ask them if they would be open to talking with local media who may want to ask them about life with EB. Once you’ve been able to confirm their interest in taking part, you have a great foundation to appeal to local TV stations and newspapers that tie an otherwise unknown disease to your upcoming event and a story source.
  • Get local vendors involved in your event. It’s always smart to check with larger brands or organizations to see if they would like to lend their support as a sponsor, but whenever possible, try to offer an opportunity for smaller businesses in the community, too, such as vendor tables, food providers or sponsors of some valuable parts of the event such as printing, promotion, goody bags and raffle items. These businesses are part of your community and want to be connected with the people you hope to draw to your event, and most local boutiques and stores can really use the media coverage by being a part of something bigger than themselves. On a related note, regarding sponsors …
  • Be sure to reach out to any of the national EB-focused vendors about getting involved, such as Hollister Wound Care and National Rehab. Your event ties with their mission of supporting EB families while providing a valuable resource for you during planning. You might even approach them about whether they would be willing to match funds raised up to a pre-set limit. In this way, you can transform a smaller $1,500-$2,000 fundraiser into a much bigger deal for the nonprofit you’ve selected.
  • Always look for new, innovative ways to raise interest and draw people to your event. For example, next year, my goal is to incorporate QR code technology so that people shopping at boutiques participating in the fashion show can buy tickets to the event right from those stores, using the customers' smartphones.
  • Try staying away from collecting supplies and stick with raising funds instead. Because so little is known about EB by most people, if you were to host a medical supplies or bandages drive, you are likely to get mostly traditional bandaging products, such as Band-Aids and Neosporin, which are helpful for other families, but due to very specific care needs, may not be appropriate for an EB family. So unless you are very specific with your drive requests, you may wish to avoid hosting this type of event and focus instead of awareness or research funding. And never underestimate the value and power of holding an awareness event. Educating the public is just as critical as raising research funds.
  • Share information about your event with women’s social and business networking groups in the area. We moms know firsthand that if you want to get something done, get a group of mothers together and they’ll make it happen! For many women’s groups, there may be a philanthropic element to the group, so your event can offer them an opportunity to give back to the community or a cause they can stand behind. Also, groups sometimes like to carry out their own internal fundraising campaign to support a community event and do so by raising dollars from their members at their monthly meeting or by recruiting volunteers or participants for your event. So spread the word heartily, but especially make certain you reach out to these ladies who care.
  • Let the organization for whom you are raising funds know about your event ahead of time. Sometimes groups can help out by promoting it on their website or in e-newsletters. Others may want to send literature or giveaway items. For my past events, DebRA has been really helpful in mailing me pamphlets and EB Awareness bracelets for the event. Some groups have a fundraising information packet or event planning kit that they can send you, too.

Whatever you decide to do, good luck with your event! And don’t forget to keep us in the loop so we can help you spread the word.

Add These Events to Your Calendar

We were excited to learn about a handful of great EB fundraisers and awareness events taking place this month and wanted to give a shout-out to the planners as well as spread the word to the community. If you’re going to be in the area, be sure to show your support. If you know of someone else who is – family, friends, maybe even your own faraway Facebook friends – consider sharing this blog with them so they might honor you by attending an event to help support research efforts or offer direct assistance to those impacted by EB.

If we’ve left off any events for this month or next, please share your event’s information here in the comments or on our Facebook page. Thanks!

  • Lilly Pulitzer Private Shopping Event (New York, NY)
    This event is scheduled for Thursday, May 10, from 6 to 8 p.m. and hosted by DebRA at the Lilly Pulitzer located at 1020 Madison Av. at 78th St. The evening will include refreshments/snacks and provide attendees the opportunity to shop the Manhattan store privately with 10 percent of all sales being donated to DebRA. But you must RSVP first to participate. To register, email or call 212-868-1573, ext. 105. Click here for more information about this event.
  • Jogging for Jonah (Clemmons, NC)
    Lace up the sneakers to raise funds for DebRA at a 5K Walk/Run or 1 Mile Fun Run being held Saturday, May 12, at Tanglewood Park, 4061 Clemmons Rd., with first race to begin at 8:30 a.m. The event is being held by the Williams family in honor of their 3-year-old son Jonah diagnosed with EB shortly after birth. May 1 is the registration deadline, so if there’s a chance you will be in the area a few weekends from now, sign up right away. Race costs $20 to participate and includes a race T-shirt. Click here to register for this event and get additional information.
  • Love for Lucas Bowling Party (Avon Lake, OH)
    This fundraiser for DebRA takes place Saturday, May 12, at 5:30 p.m. at Speyock’s Nautical Lanes, 184 Miller Rd. As the Hardman family posts on their website, it is an event to honor their late son Lucas Patrick who passed away from Junctional Herlitz EB at five weeks old last June. Tickets for the fundraiser cost $25 per person (children age 10 and under are free). The night will include bowling, shoe rental, pizza and soda, and participants can also take part in silent auctions and raffles. Click here for more information about this event.
  • Butterfly Wishes for Ellie Benefit & Silent Auction (Atlanta, GA)
    This sixth annual event promoted in honor of its 6 year-old Ellie Tavani, is scheduled for Wednesday, May 16, from 6:30 to 10:30 p.m.. at Park Tavern, 500 10th St. N.E., Midtown Atlanta. The family posts at its website ( that it hopes to raise $30,000 for DebRA this year at this event, which includes a silent auction, as well as “Dinner & Dancing Under the Stars.” If you will be in the area or know someone who lives in the Atlanta metropolitan area, please pass along the information. Guests can also contribute if they are not able to attend in person. Tickets are $75 per person, with RSVP requested by May 9. Click here for more information and to register.
  • Wine and beer tasting (Eaton, OH)
    This fundraiser is being held Saturday, May 19, from 7:30 to 11 p.m. at Taffey’s, 123 Main St. in Eaton and features a concert by Scott Paul Davis & Co. Tickets are $20 per person with proceeds to benefit DebRA of America. For reservations, call 937-456-1381, and for directions, visit
  • Time to Fly 2012 (St. Paul, MN)
    Pioneering Unique Cures for Kids (PUCK) has assembled a team to participate in the Children’s Cancer Research Fund’s Time to Fly 2012 event taking place Saturday, June 30, at Harriet Island Regional Park in St. Paul. If you’d like to cheer from the sidelines in person or virtually, visit the group online at to donate or learn more about the group’s mission to raise funds for EB research. For more information about Time to Fly, click here.

One School Puts the “Fun” in Fundraising

From time to time, we like to share feedback from successful fundraisers and the people behind those events, to offer insight on how to approach planning such a fundraiser should you wish to initiate something similar in your school or community.

004761-DSC03006_GamingForEB2 Recently, a first-grade class at St. Anne Catholic School in Tomball, Texas, took an opportunity to create their own service project to recognize and honor one of their fellow students through an innovative fundraiser called “Gaming for EB.” Students were asked to find sponsors so they could play video games (win) so they might raise awareness and funds for DebRA (win) and show their classmate Daniel who has EB that they care about him and will do whatever possible to help find a cure for EB (win!) A win-win-win for everybody… The result: kids had fun, parents had fun, faculty had fun and DebRA has funds soon to be on their way. Hear how it all came about from Elaina, one of the service project’s coordinators and first-grade room moms. (At the request of the classroom mom and Daniel’s family, we are not including last names in this piece.)

Could this be an event your school or community would be receptive to supporting? Find out what was involved to put all of it together in less than two months’ time!

EB Resource (EBR): Can you explain how the idea for this service project first came about?

Elaina: Each grade level at St. Anne is asked to do a service project for their community. We figured what better way for the first graders to have a great understanding of their service project than to help their own classmate? Daniel has been in class with the same kids for two years and they know and love him dearly. Even though they know they need to be careful because he has delicate skin, he is very much one of the group. By Gaming for EB, they would know and understand who they were helping and also see before their eyes what kindness does.

EBR: How long did it take to plan the whole event?

Elaina: We began planning in mid-September 2010, and the event was held November 10, 2010.

EBR: How many first graders took part in the gaming, and was Daniel among them?

Elaina: We had about 98% participation from the first graders – for two classes, 44 children. The only ones who could not make it were children who had prior engagements that could not be missed. We opened the event to all first graders from St. Anne and their siblings so the total number there was 75! Daniel was definitely among the group, along with his own siblings.

EBR: So how did Gaming for EB Work – did the kids raise funds through their gaming? Were players sponsored?

Elaina: All children were asked to pay a "cover charge to game” of $5. Along with that, each first grader was asked (voluntarily) to004760-DSC03025_GamingForEB1 be sponsored by one or two close family members or friends. Each child was given 30 minutes to play inside the gaming truck from While the others were waiting, CiCi’s Pizza sponsored pizza for the kids to snack on and a local Tomball drilling company donated a cotton candy machine. Along with that, we had other games to play like hopscotch, ring toss (with DebRA bracelets that they got to take home), beanbag toss, hula hoops and a big field to play kickball.

EBR: How much money was raised altogether?

Elaina: At this time, we have raised right around $2,000 with money still coming in. We had our event posted in the local Tomball Tribune, the church bulletin and the St. Anne Newsletter. Many generous people, who did not even have a part in the gaming event, stepped forward to sponsor Daniel.

EBR: What kind of feedback did you get from the kids after the event? And how about feedback from the faculty and parents?

Elaina: The kids had a blast and so did the parents. The event lasted two hours, and we were able to get everyone involved. Some of the parents helped with the extra games, passed out pizza and cotton candy, gathered the children for their turn in the truck, and some parents even gamed a little with their children. The faculty was very supportive, from helping with handouts and taking pictures at the event, to sponsoring Daniel to play.

EBR: What about Daniel and his family – what kind of thoughts did they share about the event?

Elaina: The family said they had a great time and were so glad to have this event in Daniel’s honor. Daniel’s mother was a huge help throughout the whole planning process, in addition to helping during the event.

EBR: Has there been talk about making this an annual tradition?

Elaina: We have definitely talked about it. What a great way to bring awareness to the community and for the children to actually know who they are helping. First graders get that concept!

EBR: What did being involved in this event mean to you personally?

Elaina: It was amazing to see the event come together and to witness the unbelievable support from the parents, the school and throughout the community. Everyone was so willing to help and donate, whether it was equipment, games, food, and/or money! Every step of the way, there was a small sign (and sometimes a very big sign), letting us know we were doing the right thing, in honor of Daniel, in God’s love.


St. Anne Catholic School (Tomball, TX)

Related Posts:

Advice for Planning Your EB Fundraiser Walk, Part II

Advice for Planning Your EB Fundraiser Walk, Part I

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