Kudos to EB Organizations Getting Creative

Sometimes to get people energized, re-charged and talking about a cause important to you, you have to think outside the box and use your imagination to spark others’ interest. We applaud the ways some key EB-focused organizations have been able to come up with fresh, inventive ways to not only raise funds for their group’s efforts but also compel people to want to learn more.

  • A Fund Worth Smiling About
    We first learned about DebRA’s Smile Fund earlier this year. Inspired by the memory of 7-year-old Grace Catherine Peshkur, who was born with Recessive Dystrophic Epidermolysis Bullosa and lost her battle with the disease in 2009, this program grants wishes to children with EB. Granted gifts and activities might include special birthday parties; tickets to a special theater production, concert or sporting event; family portraits; or items such as toys, books, electronics, DVDs, video games, art supplies or webcams to keep in touch with distant friends and family. Criteria are listed on the DebRA site. All submitted requests are reviewed by a designated committee, and one request is selected each month to be granted. For more information about this program, email smile@debra.org or call 212-868-1573, ext. 101.
  • Fundraising as Easy as Phoning It In
    Pioneering Unique Cures for Kids (PUCK) has been consistently finding new, innovative ways to raise research funding for the University of Minnesota’s medical foundation, certainly instrumental in the advancement of clinical studies centered on EB. So it comes as no surprise that this group was one of the first to use technology as a quick, easy means to promote the cause. Users can text “BELLA” or “TRIPP” to 50555 and a donation of $10 will be made to the university specifically for EB research purposes. The donors’ phone bills will reflect the charge or be deducted from their prepaid balance if that is the nature of their accounts. Users can do this up to six times with all donations being reserved for EB medical research. All standard messaging and data rates apply. To learn more about this, visit www.mgive.org/T.
  • Cooking Up Support for EB Families
    Earlier this year, the Butterfly Fund marketing a new cookbook containing a variety of long-time family recipes, and they discovered they had a huge fundraising hit. Cookbooks cost only $15 with $3.95 added for shipping, and total proceeds from the book went toward The Butterfly Fund’s various fundraising efforts to support EB families and clinical research. What could you develop and market with value and purpose for customers that could also serve as a great fundraising tool for your favorite EB charity?
  • A Refusal to Ignore EB
    Last month, we shared a two-part conversation with photographer Christie Zink of This Little Light, who shared compelling inspiration behind her I Refuse campaign. She took a concept and expanded it visually across a created kit of materials that consumers could use to spread awareness about EB to their friends and family. Proceeds from the $35 kit go directly to the PUCK and its EB research fundraising efforts. The kit includes a variety of promotional items from an attractive T-shirt and water bottle to bracelets, decals, bumper stickers and more. Zink launched the campaign in late May in honor of Bella Ringgold’s third birthday, and she says she could not have anticipated the response. She re-opened the ordering window several times between then and late June to accommodate the expressed interest in the kits and says she’s likely to market them again later in the summer. To stay current on any further developments with the campaign, visit the I Refuse EB campaign blog for the latest updates.

Blogging: Inspiration & Education

It’s been amazing to see how much the blogging community has grown among EB families, caregivers and patient advocates in just a few years. We’ve certainly been big cheerleaders here encouraging people to share their story, however they feel most comfortable telling it. For some, it’s writing songs or poetry; for others, reaching out to the media or lobbying elected officials. Some very creative people have found ways to use video, photography, art and jewelry-making to tell their story. But for bloggers, it is an ongoing commitment they make to share a very real, honest, sometimes painful look at life with EB from day to day. Making the decision to chronicle our lives through blogs should not be a decision taken lightly.

If you have been considering a launch of your own blog, it’s wise to ask yourself a few questions for consideration before you do.

Why are you launching a blog? It’s important to really understand your intention and reasons behind writing a blog, because you are making a significant time and energy commitment, both physically and emotionally. Once you begin making connections and starting a conversation with others, if you’re not fully vested in the reasons for doing the blog, you may find yourself quitting or contributing sporadically. For others who have now invested in learning about you and your story and started a dialogue with you, this can be disheartening for them, as well, if suddenly you are no longer an accessible voice.

What do you want the tone of your blog to be? The serious nature of EB does not mean that if you are a witty person, you’re restricted from being yourself. In fact, sometimes reading someone else’s funny perspective on a serious subject for which both can relate can actually be a real stress relief. Some bloggers choose to vary the tone to match what is going on presently in their lives. What is most important to remember is that you set the tone early on in your blog, so keep that in mind as you share with others. The more open and descriptive you are with your language, the more candid you relay personal incidents, the more you open the door for others to be just as candid and descriptive in their comments and feedback.

Who are you writing to (or writing for)? You may be simply writing to share your story for others going through similar circumstances, for personal stress relief to anyone willing to “listen,” or maybe specifically to educate those who don’t know a thing about EB. At some point, you may find yourself writing to all of these audiences at the same time as people share links with their friends, some of whom are familiar with EB, and with others, many who probably have never heard of it.

How much are you choosing to share? Again, this is a decision you really must make when you first undertake something as personal as a blog. Are there particular subjects off limits with regard to living with EB? Maybe there are specific people whom you feel you must protect and leave out of the story – by your choice or at their request. Set your parameters and stick to them from the start. It’s true that blogs can evolve as their purpose and following expands, and you may wish to reshape the nature of what it is you talk about or how openly you talk about these other topics, but let that happen naturally.

What do you hope to achieve with your blog? What is your core goal for the reader? Inspiration? Education? Motivation to act in some way? It’s helpful to determine if you are aiming to provide a sense of support and community, maybe more so than you may have experienced when your family was first educated about EB, for instance. There are definitely many more online resources today for communicating with others than there were five years ago, for example. There are forums like EB Friends and great focused nonprofits like DebRA, EBMRF, the Butterfly Fund, PUCK Fund, the Jackson Gabriel Silver Foundation, and others focused on supporting and connecting EB families to help them meet the unique challenges they face every day. Will your blog be a place to bring others to these groups to support their mission, or will you be painting a candid picture of life with EB so that people learn about it but  take action as they feel compelled to on their own?