Community Contributions

Recently, we blogged about the various gifts people bring to community forums and the resulting roles that those of us participating in these online communities take on – such as a cheerleader, teacher, igniter or fact-checker. However, besides lending your voice to the cause (literally) or contributing in more obvious ways, such as through donating money or supplies or hosting an event to collect these types of resources, there are many other ways that you can contribute to the EB community. Some may be more obvious than others, but we hope that perhaps this starting list happens to inspire you or people you know who have indicated they want to do more.

  • Marketing and publicity
    Do you know anyone who is a professional marketer – perhaps in public relations, advertising or other marketing realms? These individuals often have very creative and strategic minds that could be beneficial to anyone trying to garner interest in a fundraising campaign or plan an event. Don’t be reluctant to reach out to someone you know with these kinds of skills. And if you are someone in that career field and interested in helping out EB families you know, consider tossing your promotional hat into the mix to offer complimentary services or advice.
  • Writing and design
    Are you handy with words or a talented web designer? Why not offer your support to those who may wish to write a regular blog, pen a book or set up a new blog page? We were overjoyed to learn about Kristina Wyatt, a young wife and mother who launched the EB Awareness program through which she offers blog page design services to those in the EB community wishing to launch a blog page. She also provides assistance to those who may need other EB-themed marketing materials for fundraising and awareness campaigns. Let that inspire any of our freelance writers and artists out there to devise what they can do!
  • Cooking and baking
    Are you a whiz in the kitchen? Perhaps there would be an opportunity to develop a cookbook and donate some or all proceeds to your favorite organization. If there are local events being held, such as an awareness walk, auction or gala of some kind, can you offer your services to pitch in baked goods or side dishes? Or maybe you can donate your culinary services for a special auction prize package?
  • Art or photography
    If you’re particularly skilled in drawing or painting, what if you were to offer your services to provide free sketches or paintings to EB families? And photographers, there are plenty of services you could extend to those families who may feel like a traditional photography studio will not be sensitive to their special needs and circumstances when setting up a group photo shoot. How can you alleviate this concern and share both your skills and compassion behind the lens?
  • Financial consulting and accounting
    For many EB patients and their families, the monthly cost of the disease can take a huge toll on morale and any potential savings. If you are a licensed financial consultant, perhaps you could offer a free consultation or two to discuss strategies for addressing financial challenges. If you are a bookkeeper or certified public accountant, consider offering your services to put together a debt or medical bill repayment plan or provide assistance to get debts reduced with lenders or medical institutions.

Have you been thinking about yourself or someone else you know who has expressed an interest in getting more involved to help out EBMRF, DebRA, the Jackson Gabriel Silver Foundation or one of the other many relevant and valuable EB-focused organizations? What can any of you do to lend a hand in your own unique way? We want to hear other ideas from you, as well!

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