Please share with us any events you know of for EB Awareness Week.
Each year, Oct. 25 to 31 marks EB Awareness Week both here in the U.S. as well as internationally. It is an opportunity for those who are personally impacted by EB and those who work closely with the individuals and families affected to make it their mission to educate the general population about EB. This has also become a popular time of year for many EB-focused organizations and families to host their own fundraisers and awareness events in their communities. (Click here for more of a background about EB Awareness Week.)
Last week, we told you about what to expect from this year’s Tweet-a-thon (which we’ll remind you of in a moment), but we wanted to take this time to let you know about fundraisers and other happenings across the U.S. that will be taking place. We hope you will forward this information on to your friends and family to continue spreading the word. And we encourage you to support any of these events for which it may be possible – whether it’s directly getting involved or just sharing the information with your own Facebook friends and Twitter followers who might be located in the area where the event’s being held.
So here are some events we know that are occurring during EB Awareness Week, as well as shortly after, in conjunction with this important time of year.
EB Resource Annual Tweet-a-Thon (Online only)
Starting at 8 a.m. on Thursday, Oct. 25, we will be tweeting every hour as part of a 24-hour Twitter marathon designed to educate others about EB and encourage our followers and hopefully THEIR followers to spread the message across the twitterverse. The marathon concludes during the 7 a.m. hour on Friday, Oct. 26. In addition to raising awareness, we are out to raise funds for DebRA of America, but we need our followers’ help. For each tweet and re-tweet that includes the designated hashtag “#ebfund” during that 24-hour period, Hollister Wound Care will donate $1 to DebRA up to a maximum $2,500 donation. Be sure to bookmark http://www.twitter.com/ebresource and follow us @EBResource.
Action for Jackson 2012 (New York, NY)
The Jackson Gabriel Silver Foundation (www.jgsf.org) is hosting its annual benefit on Friday, Oct. 26 from 6:30 to 9 p.m. at Christie’s, 20 Rockefeller Plaza in NYC. Tickets start at $175. Proceeds from the event will go toward JGSF’s research fundraising efforts, which support promising therapies being developed across the country to treat and cure EB. For more information about the event or to purchase tickets, visit www.actionforjackson.com. If you have any other questions, you can email co-founder Jamie Silver at email@example.com or contact her by phone at 212-844-9369.
Honoring an EB Soldier (Arcadia, FL)
Ben and Sirena Wiley of Central Florida recently reached out to their community and the general public to create an online fundraiser in honor of their son Ben Jr., who is diagnosed with epidermolysis bullosa and whose first birthday falls within EB Awareness Week. The online fundraiser, designed to raise funds to support the family’s medical bills and wound care supplies, has since wrapped up; however, the couple will be hosting an EB Awareness event Saturday, Oct. 27 from noon until 4 p.m. at the Elks Lodge in Arcadia. The event is slated to include fun games and activities for kids of all ages, a bounce house, cake and ice cream, dinners available for purchase and a silent auction from which all proceeds will be donated to DebRA of America. For additional information about the event, contact the Wileys at firstname.lastname@example.org or 863-990-9356.
New Baden Park EB Awareness Walk (New Baden, IL)
The community of New Baden, IL, continues its annual tradition of a Walk for EB event at New Baden Park as part of EB Awareness Week and takes place Saturday, Oct. 27 at 3:30 p.m. T-shirts will be sold at the event with these proceeds benefiting DebRA of America. For more information about this year’s event, contact Jennifer McCaughtry at email@example.com or by phone at 618-954-8439.
Tropical Smoothie Café Fundraisers (Henderson and Las Vegas, NV)
Two Nevada locations of Tropical Smoothies will be taking part in this year’s EB Awareness Week. Customers will have opportunities to donate Thursday, Oct. 25, through Wednesday, Oct. 31, at the Henderson café located at 76 W. Horizon Ridge Pkwy. and 95 Fwy. as well as at the Las Vegas café located at 3390 Novat St. at Cheyenne and I-215 West. Each location will also be hosting fundraiser events on Monday, Oct. 29, for which the two cafes will donate a percentage of their sales to Pioneering Unique Cures for Kids (PUCK). For more information about these fundraisers, contact co-owner Michelle Schriver by email at firstname.lastname@example.org or by phone at 702-529-0852
EB-Focused groups at the 2012 ING NYC Marathon (New York, NY)
We are already aware of two groups – DebRA of America and Jackson Gabriel Silver Foundation – participating as community charities in this year’s popular New York City marathon, which takes participants through all five boroughs of the city and is being held Sunday, Nov. 4. Click here for more information about Team DEBRA. Proceeds to this team will go toward DebRA’s various efforts to support EB patients and their families. Also, the Jackson Gabriel Silver Foundation is taking part in this year’s marathon with its own team. If you are interested in joining or contributing to the JGSF team, contact Jamie Silver at email@example.com. All funds raised by the JGSF team will go toward the organization’s EB research funding initiatives. For more information about the race itself, visit www.nycmarathon.org.
If you know of any other events, please share that info with all of us here, on our Facebook page or email us at firstname.lastname@example.org. And good luck to any of you who may be hosting events in your own schools, workplaces or neighborhoods!