Summer and Fall EB Events

Last week was a very busy week in the EB community. Many of the final springtime fundraisers took place including Jogging for Jonah, Butterfly Wishes for Ellie, Love for Lucas and the sixth annual Walk for EB in Cincinnati. As summer approaches, we thought it would be a good time to highlight those events that we have learned about taking place later this year, so far, and hopefully inspire others to coordinate something in their own communities.

If you hear about any other events or are planning one yourself, please send us all of the details. You can email me at We’ll do our part to help spread the word here at the blog and via Twitter and Facebook.

  • Ayden Lee’s 3rd Birthday Party (Niles, OH)
    This special Elmo-themed birthday celebration is being held on Saturday, June 15. The event will take place at Waddell Park, 1000 W. Park Av. Guests are asked to bring a covered dish and drinks, as well as wear the color red in honor of Ayden’s best friend Jaxon who has EB. In lieu of birthday gifts, donations in Jaxon’s name are requested at to benefit families supported through DebRA of America. For more information, click on this event link.
  • MW Foundation and DebRA Tennis Pro-Am (Queens, NY)
    Details for this sporting event are still being worked out but the scheduled date is Wednesday, August 28 and plans are for West Side Tennis Club, located at 1 Tennis Place, to host the event. Proceeds from this inaugural fundraiser will benefit DebRA of America. For more information, click on this event link and scroll halfway down the page.
  • 2013 Medtronic Twin Cities Marathon Weekend (Minneapolis, MN)
    The Jackson Gabriel Silver Foundation is currently recruiting for its team as part of a weekend-long array of events Friday through Sunday, October 4-6 including a marathon, 10-mile, 10K and 5K. Team JGSF will be running to support the work of University of Minnesota EB researcher Dr. Jakub Tolar. If you would like take part as a member of the team or get involved in some way, email Proceeds will benefit DebRA. For more information about this and other events for the organization, click on this event link.
  • Frontiers Day Fundraiser (Paris, AR)
    This event coincides with the 33rd Annual Mt. Magazine Frontier Days Festival held in October, featuring its first ever Civil War re-enactment. The EB event will be held Saturday, October 5 at the Logan County Fairgrounds, 301 W. Walnut. There will be a DebRA booth with information about EB and raffles, giveaways and a special silent auction of handcrafted items. You can get additional information about this year’s event or how to donate an item by emailing Cindi Hunter at Proceeds will benefit DebRA. For more information, click on this event link.

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