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!

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.



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.