Epidermolysis Bullosa (EB) is often referred to as the worst disease you’ve never heard of. An individual with EB lacks a critical protein that binds together the layers of skin. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal. EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. Children with specific types of EB are highly susceptible to various, often fatal, forms of skin cancer.
Researchers know what causes EB – they’ve identified the EB genome and are working on potential cures every day. But research takes money – and because EB is a rare disease and receives little funding, the burden falls on grassroots efforts led by parents of EB children.
The EB Research Partnership (“EBRP”) is the largest nonprofit dedicated to funding research aimed at treating and curing EB. They fulfill their mission by partnering with non-profit and for-profit entities and individual donors. EBRP applies concepts from venture capital investing toward philanthropic goals. They raise transformative capital. Each donation has the ability to fund multiples of its original value in research for years to come. When they make a traditional donation to a research project, they retain the added upside of generating a recurring donation stream if the therapy or product is commercially successful. They then use this revenue to fund additional EB research.
The goal of the One Day, Every Day brochure and microsite was to raise awareness and serve as the next level of engagement in fundraising for the organization. EBRP’s co-founders believed stronger, more empathetic communication materials – like a brochure and microsite – would help EBRP shorten the cultivation cycle for transformational donors and raise the commitment levels of present donors.
Audience & Strategy
Board members and the executive director would use the brochure primarily for 1:1 cultivation, also sharing it with high-value partners such as government agencies, legislative advocates and co-funders. After their cultivation calls, they also needed an immediate “next level” of inspiration and course of action to encourage major investment.
Creatively it was important that the story was told from the perspective of the young child who deals with intense pain every day, the parent who tirelessly tends to their child around the clock, including three hour dressing changes every day, and from the researchers, often parents themselves, who are racing against time to find a cure for this horrible disease. It was important to portray the disease in an unfiltered, authentic manner, as hard as it may be to look at sometimes, so candid photography was used throughout the narrative. At the same time, the message had to be hopeful, so the copy provided a more optimistic tone.
In terms of results, this is what one of the founders and directors had to say: “I agree that yes, the expected measurable results had a lot to do with fundraising. We ultimately used the brochure as our end-of-year campaign and I think it had a great impact. It was an “a-ha moment” for people who had not given during the year. I think another expected result was having high-quality materials/resources such as the brochure and microsite that could be used to introduce people who know very little/nothing about EB to the cause and we have used it a lot in this way. I think the fact that there are so many visuals really helps. It is perfect to give out at cultivation events/events with many people who have never been to an event for EB before.” Fundraising goals were met last year, and while it’s hard to quantify how much money the brochure and microsite specifically “raised”, fundraising never stops. The search for a cure will continue until it is found.