EB Awareness Week Is Here!

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 info@jgsf.org 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 mrs.wiley1@yahoo.com 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 grantland_pooh@hotmail.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 michelle@makinvestments.com 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 jsilver@jgsf.org. 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 leslie.rader@hollisterwoundcare.com. And good luck to any of you who may be hosting events in your own schools, workplaces or neighborhoods!

Tweeting to Support EB Families

Follow along on #ebfund next week for our annual Tweet-a-Thon to raise EB awareness and funds!

We’re excited to once again launch our annual Tweet-a-Thon in honor of the nationally and internationally-recognized EB Awareness Week. This will be our third consecutive year doing the campaign, and we wanted to make certain that members of our online community were aware in advance of what to expect and how to get involved.

Each year, we like to take this important week designed to raise the general public’s awareness of EB to not only educate but also to give everyone a chance to give back in a very easy and fun way. For 24 hours straight, we will be tweeting every hour about EB in the hopes that our followers will re-tweet our updates to their own group of followers. In this way, we can all work together to reach as great a number of people as possible, and by the end of that 24 hours, we will know that there are more people familiar with epidermolysis bullosa than when the day started.

But the Tweet-a-thon has a very real reward element attached, too. For every tweet and retweet during that 24 hours using our designated hashtag #ebfund, Hollister Wound Care will donate a dollar — up to $2,500 — to DebRA of America in support of its tremendous work with individuals and families facing EB each day.

So think about it – if you re-tweeted at least 20 of our two-dozen messages to your own Twitter followers and another 49 of our Twitter followers did the very same thing, that would be $1,000 right there alone going to DebRA! Just imagine if you can persuade some of your own followers to hop on the campaign with us and forward to their group of followers.

Here is what you need to know to help:

  • Yes, you need to be on Twitter to participate. It's free to join. Open your account today here.
  • Follow us @EBResource and consider bookmarking our Twitter page. You may even want to put a little reminder chime on your phone for the start date and time of the campaign — or maybe even every hour on the hour to remind you to visit our page often!
  • Searching for the hashtag #ebfund will also call up the posts.
  • On Thursday, Oct. 25 at 8 a.m. EDT, we will tweet once every hour for 24 hours straight as we lay out the background story of EB, a Twitter campaign that we’re calling, “EB: A Day in the Life.”
  • Anytime between that Thursday morning and the 7 a.m. hour when we’ll wrap up the campaign on Friday, Oct. 26, you can help us by re-tweeting (RT) our updates to your followers or sending your own tweets to them. Please make sure to use the designated hashtag #ebfund when you do.

Each year, we enjoy tackling the not-so-easy task of telling a story about EB to those unfamiliar with it, because we know that you’ll be there with us every step of the way. I hope we can count on your support again this year and that of your friends with whom you share this blog link.

And thanks so much in advance for all of your help!

EB Awareness Week Checkpoints

It’s hard to believe that EB Awareness Week is just a month away. Will you be taking part as a participant or host of an awareness event or fundraiser this year? This special week can be an ideal opportunity to collaborate with your neighborhood, child’s school or workplace and educate others about epidermolysis bullosa.

Over the next few weeks, we’ll be highlighting some events taking place later this fall, including during EB Awareness Week, scheduled for October 25-31, as well as details about this year’s Annual Tweet-a-Thon that we’ll be doing to raise funds and attention for EB. For now, we urge you to get yourself as prepared as possible for EB Awareness Week. Some suggestions:

  • Get friends and family on board now. This is as good a time as any to introduce those closest to you to this week designated both nationally and internationally. Here are a couple of useful links to support your efforts to educate them about the week: DebRA’s guide to the week and the Walk a Mile in My Shoes© campaign.
     
  • Set goals and expectations early. With just 30 days left to promote your event and get details completely squared away, jot down specific goals – maybe a fundraising amount, number of attendees or hits on a web page – whatever metrics will allow you to measure your event’s success. It also enables you to set expectations with others as you share these goals and energize others to take part in the effort.
     
  • Establish a presence on Twitter. If you don’t already have a Twitter account, establish one and begin using the social media platform to not only promote your own upcoming event but to support EB Resource in its annual Twitter campaign. So get ready to do some serious tweeting, re-tweeting and the like. This is the third year EB Resource will spend 24 hours tweeting about EB, so stay tuned for details about this year’s campaign and how you can help.
     
  • Connect with other EB Awareness Week event hosts. People often underestimate the power of networking to multiply the reach of a message. Invest some of your time and energy this month by getting to know others who like you feel that educating others about EB is worth the time and effort. Then use your own various channels to spread the word about your campaign as well as others across the country. We can’t think of a better way to support each other in the community!

If you have an upcoming EB Awareness Week online campaign, fundraiser or other awareness event, please send us details so we can share it with the community in a future blog. Just email us at leslie.rader@hollisterwoundcare.com. We look forward to hearing from you, and good luck with your planning!

Spring into Action

Spring. We love this time of year. For some of us, it may represent a season that's all about growth and renewal – spring cleaning, decluttering, blooming flowers and plants. We think it’s a great time to take inventory in other ways, including yearly resolutions and our goals.

This also is a great time to look ahead and make plans for you and your family when it comes to learning opportunities ahead. How can you add to your own repository of knowledge when it comes to EB? Most of us would agree that you can never gather too much information. So what can you do to pay it forward – with what you’ve learned, what you’ve gathered along the way or with any other ways to give back to others?

  • Share links and information — Have you been talking about starting your own blog about living with EB? Why not use this season to finally launch it? What other means could you use to share helpful websites or information you discover along your journey of educating yourself more about EB?
     
  • Donate extra supplies or materials – Occasionally, a family might find that a particular wound dressing or other supply item didn’t work specifically for their own situation, but it just might work for someone else. Inquire with groups like DebRA and EBMRF about ways to share any unopened and unused supplies with other patients and their families.
     
  • Make plans to connect with others – It’s great if you are able to attend DebRA’s Patient Care Conference in Orlando this summer, but if you can’t travel to Florida, why not look into a support group that meets somewhere in your state or a nearby state? Some groups may meet only once or twice a year, but it could offer a really valuable opportunity to get to talk one-on-one with people who completely relate to your challenges. Meet up and share information and experiences, and learn from each other in a completely open and welcoming environment.
     
  • Start planning your future fundraiser – Whether you plan a small springtime fundraiser or invest more time and effort into planning for your EB Awareness Week fundraiser in October, the key is to begin. This is a perfect time to start talking with others in the community about how they can lend their support and get a feel for what kinds of activities might draw attendees to your fundraiser event.
     
  • Recharge yourself – Why? Because you deserve it. If you’re a caregiver, you know how much energy the job requires. If you’re a family member on top of that, the emotional drain can take its toll as well. And if you are living with EB, it’s important for you to find means of building your strength, spirit and energy, and that may mean a low-impact activity that fuels the mind, too, such as swimming, yoga or meditation. You may find true inspiration by exploring artistic means of expression, such as writing, painting or photography. This is a wonderful time of year to invest in yourself because, after all, you have a lot ahead of you, and you’re going to need that stamina and good spirit!

What are some things you can do this spring to refocus your efforts to heal, to learn, to motivate and to inspire others to educate themselves about EB?