Springtime EB Awareness Events

From time to time, we like to take the opportunity to share how EB-focused organizations and individuals are using events or launching their own as a means of creating EB awareness. Sometimes it takes finding unique ways to tie our interests or talents to a good cause.


Many in the EB community who run or walk for recreation have found a way to channel their participation in race events to create or join teams and raise funds for EB-focused nonprofits such as debra of America and EB Research Partnership. Some upcoming events with representatives hitting the pavement to raise EB awareness include the 2017 Skechers Performance Los Angeles Marathon (March 19), 2017 United Airlines NYC Half Marathon (March 19), the 2017 Cincinnati Flying Pig Marathon (May 6) and the 2017 TD Five Boro Bike Tour in NYC (May 7).


In addition to such participation in national races, the EB community is getting the word out about EB via other upcoming events across the country we wanted to share here and encourage you to pass the news along or show your own support if you feel so inclined. If you know of any other events or are planning your own upcoming fundraiser or awareness campaign, comment below and share that information.


  • 3rd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, March 25 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. Families are invited to come out for an afternoon of fun and community. For more information on how you can show your support, click here.


  • 6th Annual Jogging for Jonah (Winston-Salem, NC) – This event is being held in honor of Jonah Williams Saturday, April 1 at Pinedale Christian Church and offers activities for the whole family. This year, the 5K and Fun Run have been combined into one fun-filled running and walking event, Laps for a Cure! This new race will allow participants to select the number of laps they would like to run/walk and raise money per lap completed. Proceeds benefit debra of  America. For more information on how you can show your support, click here.
  • Ride for EB 2017 (NYC) – Those who enjoy cycling can strap on their spin shoes Sunday, April 30 for a charity ride at Cyc’s new Upper East Side location at 1231 3rd Av. Registration is $50 and includes a 45-minutes of invigorating spinning with “Cycologist” expert Ellie Eagle, complimentary spin shoes and water and five raffle tickets for an opportunity to win prizes. All proceeds benefit EB Research Partnership. For more information on how you can show your support, click here.
  • 11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Attend this annual fundraiser event in honor of Ellie Tavani to benefit debra of America. This year's event will be held at The Park Tavern in mid-town Thursday, May 4. For more information, click here.

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