Spreading the Word for Spring and Summer

With spring already here and summer just around the corner, we thought it would be a good time to share information about upcoming events or fundraising campaigns that debra of America and other EB-focused organizations have planned during that time. If you know of others, let us know. You can email me at leslie.rader@hollister.com.




  • All in for a Cure (NYC, NY) – Spend an evening trying your hand (or several) of Texas Hold’em Wednesday, April 13 at the Penn Club of New York as guests compete for prizes throughout the night and benefit the EB Research Partnership. The evening includes appetizers, cocktails, a light dinner and dessert. For more information and to buy tickets, click here.

  • 2nd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, April 16 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. To find out how you can show your support and to get more event details, click here.

  • Butterflies Keep Flying Book Launch Party and Fundraiser (Richmond, VA) – Come out to join Ali Pfautz, The Story Lady, when she brings her book Butterflies Keep Flying to the Barnes & Noble at Chesterfield Towne Center (11500 Midlothian Turnpike) Saturday, April 16 for a book launch and special readings at 11 a.m., 1 p.m. and 3 p.m. A percentage of sales will be donated to debra of America. For more information, click here.
  • 5th Annual Jogging for Jonah (Winston-Salem, NC) – This event to be held Saturday, May 14 at Pinedale Christian Church offers activities for the whole family including a 5K chip-timed race for the serious runners, a one-mile Fun Run for everyone else, kids’ activities, inflatables, face painting, raffles and more. All proceeds will be donated to debra of America. For more information, click here.
  • 2nd Annual dash4dEBra (Lake Forest, IL) – Lake Forest Academy serves as host Sunday, May 22 at this fundraiser race. Proceeds from the day support debra’s many programs providing medical supplies to families and patient access to specialists, as well as raising funds to support research efforts. For more information, click here.
  • 10th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Take part in this signature fundraiser event in honor of Ellie Tavani which raised nearly $50,000 last year for debra of America. This year’s event will be held at The Park Tavern Thursday, May 25. For more information, click here.
  • 2016 debra Care Conference (Grapevine, TX) – EB families are encouraged to sign up soon for this special event held every two years, and this year, being hosted by the Gaylord Texan Resort & Convention Center just outside of Dallas Sunday, July 24 through Wednesday, July 27. For more information and to register, click here.
  • 3rd Annual Knoxville 5K (Knoxville, TN) – Those who’d like to take part in a fundraiser to support EB families and who also enjoy a good race can lace up the sneakers Saturday, Aug. 16 for this race at Victor Ashe Park in honor of an area 2-year-old living with EB. The race starts at 8:30 a.m. with proceeds to benefit debra of America. For more information and to register, click here.

EB Voices on a Mission

The EB community is brimming with supportive people who have figured out the best way to use their talents and platform to make a difference in the lives of families impacted by the disease. We like to occasionally use our blog to recognize those efforts both as a way to share our gratitude for their creativity and determination as well as to inspire others to find their own unique path to do some good for EB families. For May, a month associated with celebrating some very special women — moms everywhere — it seems appropriate that most of the EB voices being celebrated in this blog are moms or daughters on a mission to support the EB community.

  • Elaine Fuchs, stem cell pioneer
    Fuchs recently earned the highest scientific honor awarded for her groundbreaking work in stem cell research. She has been hailed as the first scientist to biochemically characterize keratin and then go on to clone identified strands in her lab. Click here for a recent article to learn more about a woman who has truly helped the EB research community make tremendous strides.
  • Dozier-Libby Medical High School “Super Students”
    On the surface, Iliana Azevedo, Cassie Pambid, Maria Romero and Diana Sanchez might simply appear like typical teenagers or high school students but a recent school project that implored them to “Be the Change” was precisely the inspiration they needed. The group ventured into learning more about something many people knew nothing about — epidermolysis bullosa. Once they did, they felt compelled to do more and so they did, and raised $2,000!
    Click here to learn about this group of amazing students in a recent article.
  • Patrice Williams
    As a mom both to 6-year-old Jonah Williams who lives with EB every day and a toddler, Patrice Williams is one busy lady but she continues to be a regular voice as a mommy blogger in the in the EB community with her Before the Morning blog. And just this weekend coming up, she and husband Matt will host their fourth annual Jogging for Jonah event in Tanglewood Park in Clemmons, NC. Proceeds benefit DebRA of America. Click here for details about the event. Kudos to Patrice and her family for doing their part to remind us that no matter how busy our lives can get, there is always a way to come together and do something good for others, too.

These are only a few of the awesome people who are making a difference in the lives of others here in the EB community. There are many more and we will continue to introduce them to you on a regular basis on our blog.

If you are involved in any upcoming EB fundraisers or awareness events, or know organizers who are, please send us the information so we can share it with our friends on Twitter and Facebook, as well as here on the blog. Just email me at leslie.rader@hollisterwoundcare.com.

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 leslie.rader@hollisterwoundcare.com 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.