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.

 

 

EB in the News

A lot has changed since we first launched the EB Resource blog a little more than 3 years ago. Finding links to anything related to epidermolysis bullosa was difficult — not that it’s gotten easy to do, but in 3 years’ time, there are definitely far more people talking about EB than there were before.

 

Each time we go online and find a new YouTube video or an article about a family hosting an EB-related fundraiser or a link to a local TV news outlet's story about a family faced with EB, we are encouraged. Our whole goal has been to start a dialogue across the country about EB, and our daily mission is to present these little snippits of conversations to our community to help further the talk within our own circles, our own schools and neighborhoods. And we’re definitely getting there.

 

In the past year, we’ve watched people across the country come together in support of young parents facing the loss of their children to EB — parents like inspiring mom Courtney Roth whose son Tripp prompted many to hold EB awareness rallies and fundraisers. We have witnessed prayer vigils and virtual campaigns to support families going through the touch-and-go nature of clinical trials like the Knuth family, as son Charlie underwent stem cell replacement at a Minnesota children’s hospital and faced both victories and setbacks throughout the process.

 

We are reminded each time we produce our own blogs that each new story we tell, information we share or organization we introduce, that it is another link that could be the lifeline for someone else. These stories also help give others a basic foundation of information about a disease so few know anything about. We know that any link we can put out there could catch the eye of someone looking to invest their time, clinical research efforts or even funding into a meaningful cause that could potentially change or save lives, maybe even the course of medical research as it is known.

 

So with just a few weeks left until we enter a new year, we invite you to join us in finding opportunities to launch conversation about epidermolysis bullosa – whether that means sharing your own story, encouraging others to tell theirs or motivating personal and professional networks to invest in learning more about EB. The collective voices of those with EB, their families, researchers, caregivers, fundraisers, bloggers, Tweeters, authors, nonprofits and other EB advocates – all of these efforts are what have allowed us to start the dialogue about epidermolysis bullosa. We look forward to joining all of them in expanding that conversation further in 2013 and hope you’ll join us.

EB Champions Worth a Cheer

Nothing pleases us more than to discover new voices out there trying to raise awareness or support for those directly impacted by epidermolysis bullosa. We call them our EB Champions, and we’ve got another trio to recognize for the work they’re doing to help others become more familiar with the disease and introduce them to organizations raising funds for EB research. In addition, some of these champs have figured out a way to use their talents to directly support EB families, and we think that’s worth celebrating. Kudos to all of them for what they are doing.

  • Kristina Wyatt and EBAwareness.com
    At her website EBawareness.com (www.ebawareness.com), the self-described “EB ambassador” describes her life as simple, fulfilling and busy, and regards her children as her greatest achievements, but we think what she’s doing to help the EB community is terrific. This IT professional by day who claims graphic design and web development are just hobbies has launched not only a website but a Facebook page to publicize fundraisers and awareness events, as well as promote special campaigns, including a successful EB Awareness Bracelet Campaign. Wyatt is a perfect example of someone investing in a cause she feels passionate about and using her skills to educate and network with others who are on a similar mission.
     
  • Christie Zink and This Little Light
    When photographer and founder of Elan Images Photography Christie Zink met up with Tripp Roth this past year, she was inspired by his spirit which she captured so beautifully in pictures with his mother Courtney. Wanting to make a difference in the lives of families like the Roths to provide long-lasting memories through her unique form of visual storytelling, she partnered with a Minnesota charity to create the project This Little Light to provide custom portrait services to these families. Though Tripp has since passed, she says on her blog that his spirit continues to shine and inspire her to raise EB awareness. And we think that she has a real gift for shining the spotlight on the beauty, love and spirit of those she photographs, and we encourage those in the community to share information about this great project with EB families you may know. What a wonderful gift …
     
  • The Scanlon Family
    Recently, Liz and Gary Scanlon opened their doors to documentary filmmakers to share their lives as parents of now 4-year-old Claudia, who was diagnosed at birth with EB. DEBRA Ireland has since uploaded the documentary, Touched by a Butterfly, in two parts on YouTube.com. (Click here for part two.) Viewers not only get an honest portrayal of what living with EB looks like but also see firsthand how friends, family members and schools can support a family, as those in the lives of the Scanlons work together to support Claudia and her parents. We are so thankful for families like the Scanlons for their willingness to share a thoughtful and sensitive depiction of life with EB. It’s definitely worth checking out and sharing with others.