Overcoming the Challenges of EB Event Planning

Planning or hosting a fundraiser is never easy. Over the course of the past two years, we’ve tried to offer some helpful tips on a variety of fundraiser topics, such as developing awareness campaigns, planning a fundraiser, and coming up with fundraiser ideas. We’ve also tried to spotlight specific EB awareness events and fundraisers that were successful and feature direct thoughts from those behind them, including Kristy and David Kissell, founders for Walk for EB, and St. Anne Catholic School in Tomball, Tex.

But as those who begin planning their EB function quickly learn, there are likely to be a few challenges in store, so we wanted to make you aware of these if you haven’t planned your first such event and offer some pointers for overcoming them.

  • Lack of familiarity with the cause. You may face some difficulty initially garnering support for hosting an event or contributing to an EB-focused organization – more so than you might when raising funds for an after-school program or a more commonly known nonprofit or disease, such as the Salvation Army or Susan G. Komen Race for the Cure for breast cancer. Be sure to bring to the conversation all of the necessary facts to discuss accurately and fully the topic of epidermolysis bullosa so that you can properly educate the individual or group to whom you are appealing. Also, arm yourself with the necessary background information about the organization from which you are hoping to raise funds.
  • Concern with the rarity of the disease. Don’t be alarmed if you experience some resistance to championing your cause because of the disease’s smaller ratio of individuals impacted in comparison to more widely known afflictions, such as cancer or diabetes. It is important to focus on the severity of the illness and how it is affecting those diagnosed with EB – both the individuals and their families. Also, it would be helpful to offer recent clinical research information so those you are approaching can understand that great strides are in progress and these programs are in need of additional support to continue their work.
  • A visibly disturbed reaction to the “face” of EB and its effects on those diagnosed. We have witnessed much debate on Facebook regarding the practice of sharing graphic photos depicting children or adults with EB. People have questioned how much is too much and how much is necessary to communicate to others what those living with it know all too well: that EB takes a tremendous physical toll on those with the debilitating skin disease. As you approach others about teaming up for a fundraiser, it may feel necessary to paint a vivid and true picture of what EB looks like every day. However, you will also want to keep in mind that other people may have strong reactions to the painful and heart-wrenching images of life with EB. Roll out such images with consideration and forethought. After all, your ultimate objective is to raise awareness and funding for a cause you believe in greatly, so being sensitive and aware of a possibly strong response is just being proactive.
  • Lack of built-in interest or a reliable volunteer/participant base. Because EB is not a widely known disease, you will not have the quick, easy access to dozens of volunteers who want to hop on board to help out for your upcoming fundraiser. You can anticipate a fair amount of promotion on your part and recruiting of those close to you to – not only to help get the word out about the event but to recruit others to join in the effort. This should not dissuade you from planning your first EB Walk, special fundraiser promotion, or other campaign. Use those supportive resources in your inner circle – friends, family, co-workers, neighbors, and students and their families – to be an important part of your team. They can help you grow interest in making EB not only a cause that you and your team believe in, but also one that the entire community can believe in and want to support, too!

We invite others who have planned their own EB awareness events and fundraisers to chime in with their own thoughts and experiences and the types of obstacles people may encounter. What are some lessons you learned along the way that you can share with others to prepare them for challenges to come?

1 comment

  1. Laurie Sterner says:

    Even though I personally do not understand how someone can look away from a photograph of a child with EB, I realize there are many people who do. Because I think it is SO important to show the reality of EB, I made a very nice scrapbook up with all the “hard to see” photos.
    Right on the first page it states that the photos in this book are “graphic” and I do offer a warning..this way, they are still at the event to view, which is so very important. 
    I have held 3 large Fundraisers and EB awareness has been key in all of them.  We also do smaller events as well for Awareness only.  I would be happy to offer any advice or help along the way if needed.