Raising awareness for EB

Storytelling using the photo essay format, or multimedia presentation can be a strong tool in advocacy journalism, and raising funds for non-profits. But what happens when the very organizations that are raising awareness for a topic find themselves walking a fine line between wanting to raise awareness and using their funding to support their mission. It is a case that I have recently faced in my effort to promote th e photo essay ‘Garrett: The Boy Beneath The Bandages’ to EB non-profits, corporations, and larger scale organizations that associate themselves with the disease, and help raise awareness.

How do you raise awareness for EB without telling the story of daily life with the disease? Using forensic images of badly blistered and damaged body parts is one way to get the attention of your audience. But once the shock-and-awe has passed then what? The physical damage to the body is only one aspect of the life of an EB victim and their family. What about the struggles of daily life? Raising awareness isn’t just about showing the physical damage—making us feel bad for the victim. Its about showing that life goes on, the triumph of the human spirit in the face adversity. Even though the victims suffer they still try to live a normal life for themselves.
I was surprised to hear that every organization that I contacted did not have grants or budgets to support artistic work, i.e. photography, of the disease. This photo essay is a slice of life from the perspective of a 12-year old boy with EB, and his family. What better way to raise awareness by showing what daily life is like with this disease. Why don’t these organizations support this type of work? Why aren’t these images taken more seriously, and why aren’t there more stories like this out there from within the EB community?
You want people to truly understand what EB is all about and donate to your cause, be it research to find a cure or helping EB families with finances, show them photos like this—from the trenches, the war that is EB. Only then will the general public realize just how sad, painful and unfortunate this disease is. Yet how strong and enduring the people are who deal with it on a daily basis. We can raise major awareness for this disease, and hopefully see a cure some day. We can do this with visual storytelling—photography and multimedia.

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