From time to time, we like to let the rest of the community know about upcoming EB fundraisers, educational events and campaigns we hear about that are taking place across the country. These help raise EB awareness and, in some cases, dollars for support and research. Here are just a few events we’ve discovered that are happening during the next few months.
Rafi’s Run (New York City, NY)
This 5K walk/run event is scheduled for Sunday, March 11, at 10 a.m. (rain or shine) at Riverside Park on 103rd Street, Upper West Side of New York City. Those who register to participate as runners or walkers are asked to try to raise at least $500 in donations. There are other ways to support the event, such as sponsorships and donations. Proceeds from the event will benefit DebRA of America. The main message on the home page is "the cost of doing nothing is too great and success is in the doing," and we couldn’t agree more. For additional information about the event or how to get involved, visit www.rafisrun.com.
Butterfly Benefit Fashion Show and Silent Auction 2012 (St. Mathews, KY)
This annual event is taking place Saturday, March 17, at The Olmsted, 3701 Frankfort Avenue in St. Matthews. Event features a silent auction, which begins at 11 a.m., and lunch at noon, followed by a fashion show. The event supports DebRA’s New Family Advocate Program, which provides assistance to new EB families by sending them a care package full of EB-friendly wound care products and practical information about wound care and other important EB care issues. The program also enables the family to receive a home visit from an experienced caregiver after the family brings their new baby home. Those interested in purchasing tickets can click here for online registration.
Beer and wine tasting (Eaton, OH)
This fundraiser is scheduled for Saturday, May 19, from 8 to 11 p.m. at Taffey’s, 123 Main Street in Eaton and features a concert by Scott Paul Davis & Co. Tickets are $20 per person with proceeds to benefit DebRA of America. Call 937-456-1381 for reservations. For directions, visit www.taffysofeaton.com.
Time to Fly 2012 (St. Paul, MN)
Pioneering Unique Cures for Kids (PUCK) has put together a team to participate in the Children’s Cancer Research Fund’s Time to Fly 2012 on Saturday, June 30, at Harriet Island Regional Park in St. Paul. Supporters can join the team, cheer from the sidelines, or acknowledge their mission to raise funds for EB research by making a donation online at www.puckfund.org. For more information about the Time to Fly event, click here.
2012 Patient Care Conference – Countdown to a Cure (Orlando, FL)
Families facing the challenges of EB can sign up for this bi-annual event sponsored by DebRA being held Monday, July 30, through Thursday, August 2, at the Gaylord Palms Resort in Orlando. Guests will be able to meet other families, learn more about trends in care and research related to EB, and enjoy the best of Florida without having to step outside at this beautiful indoor resort. The schedule continues to be updated, but patients and family members can click here for PCC 2012 registration and early agenda information.
Do you know of any upcoming events or fundraisers benefiting a local family living with EB or an EB-focused organization? If so, email us all of the details at firstname.lastname@example.org. And if your event is being held sometime later this month or next, leave a comment here or on our Facebook page with details and a link to more information!