Teaming Up for EB Awareness

With EB Awareness Week right around the corner, we thought it would be a good time to share information about upcoming EB-related fundraisers and awareness events that we have learned about. If you know of others, please feel free to leave a comment on the blog, Twitter or Facebook with all of the details. And good luck to all of the event organizers! We are wishing you much success with your missions!

  • Virtual Strides for EB (Online) – EBMRF is hosting a unique month of online fundraising during which participants can register at the Virtual Strides website and connect their racing success at any location while promoting EB awareness. Thursday, Oct. 1 through Saturday, Oct. 31 Distances include 5K, 10K, and half-marathon. An FAQ about how Virtual Strides works can be a helpful read so visit this page here to learn more about the process. Cost to take part is $28. Register for the Butterfly Children virtual 5k/10k/Half Marathon and receive a custom race bib and 4" butterfly medal. A portion of the proceeds from this event will be donated to EBMRF. For more information or to register, click here.
     
  • EB Resource 24-Hour Tweetathon (Online) – It's time again for our annual tradition during which we devote 24 hours entirely to tweeting about EB on the hour, every hour. We ask those who follow the EB Resource Twitter page to RT as many if not all of our tweets designed to introduce EB to those unfamiliar with the skin disorder and spotlight helpful EB resources and voices in the community. We ask each of you to RT whenever you can during that time and be sure to include our  hashtag #RT4EB. The Tweet-a-Thon to starts noon Monday, Oct. 26 and runs through the 11 a.m. hour Tuesday, Oct. 27. Thank you in advance for your support!
     
  • Community Council Webinar on Active and Upcoming Clinical EB Trials (Online) – In honor of EB Awareness Week, those interested in learning more about EB can register for a special webinar at 7 p.m. Tuesday, Oct. 27 presented by top researchers and representatives to answer questions about current clinical EB research. Researchers from various companies and educational institutions including Dr. Jakub Tolar from University of Minnesota and representatives from Stanford University will be on-hand. For more information or to register online, click here.
     
  • Team DEBRA at the NYC Full Marathon (New York, NY) – Show your support for the DebRA of America Team participating in the 2015 TCS New York City Marathon onSunday, Nov. 1. To help raise awareness and funds for research and free programs, sign up to be a a runner or donate! 100% of donations raised will benefit programs and services for EB. For more information, click here.
     
  • Action for Jackson 2015 (New York, NY) – Come out for a tasty evening of cocktails, appetizers and auction bidding at The New York Public Library 6:30 p.m. to 9:30 p.m. Thursday, Nov. 5 and support the EB Research Partnership. The theme this year is An Evening to Celebrate Progress. Attend the fundraiser and support the research efforts of the organization. For more information or to purchase tickets, click here.
     
  • Annual DebRA of America Benefit (New York, NY) – Spend an evening at the lovely Solomon R. Guggenheim Museum and enjoy an exclusive performance by iconic former American Ballet Theatre Principal Dancer Julie Kent along with others at this annual fundraiser to be held on  Monday, Nov. 16 at 6:30 p.m. to 9:30 p.m. Evening includes cocktails, hors d'oeuvre reception, silent auction, and a DJ set by platinum-selling singer/songwriter, Kate Nash. For more information or to purchase tickets, click here.

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 leslie.rader@hollisterwoundcare.com 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.