Frustrated by the lack of progress on Alzheimer’s, in 2010, two passionate social entrepreneurs, George and Trish Vradenburg, together with cofounders Meryl Comer and John Dwyer, created UsAgainstAlzheimer’s. Combining the force of possibility and the power of optimism, their approach has been to disrupt the status quo, identify the barriers to success, and fight for a cure. To do this, they understood that they had to build a coalition of government, industry and medical professionals.
Simultaneously, they needed to redefine the approach to a cure with individuals living with Alzheimer’s Disease and caregivers at the center of research, drug development clinical trials and patient care. With this approach, UsAgainstAlzheimer’s has changed the entire landscape of the fight against Alzheimer’s.
The organization’s many milestone successes include: securing the national goal of preventing and effectively treating Alzheimer’s by 2025 through the National Alzheimer’s Plan; driving global efforts that resulted in the G7 embracing a similar 2025 goal and calling for greater levels of research investment and collaboration; helping drive U.S. investment in dementia research at the National Institutes of Health from $48 million in 2010 to $1.4 billion for FY2017 (a more than three-fold increase); and creating a nationwide grassroots coalition of more than 90 organizations/corporations touching well more than 3 million individuals.
The organization’s key ongoing initiatives are:
- drive more dollars to Alzheimer’s research
- move innovative medicines to market faster
- design patient-centered drug development care
- improve caregiver support
- change America’s approach to brain health
Responding to the need to remain agile and nimble, the organization’s networks and coalitions work on separate tracks with separate goals and objectives. While this model is highly effective in terms of mobilizing large numbers, a cohesive UsAgainstAlzheimer’s message was not an organizational goal. The organization now has key pillars that every network recognizes and works toward.
Growing the Prospect Pool
Now in its seventh year, UsAgainstAlzheimer’s is focused on expanding its prospect pool beyond its original founders and partners. Focusing on the donor perspective, underscoring compelling personal narrative, and understanding the organization’s most compelling messages, while still a collective challenge, has been fundamental to the organization’s continued annual growth in development revenues.
From its inception, UsAgainstAlzheimer’s has worked through collaboration, mobilizing the most deeply affected communities and forging important partnerships. With seven networks including AfricanAmericansAgainstAlzheimer’s, LatinosAgainstAlzheimer’s, VeteransAgainstAlzheimer’s and WomenAgainstAlzheimer’s, and five coalitions, each with its own mission and messaging, one of the key challenges for this start-up development operation was to define how to message this organization for individual donors, prospects and connectors.
The challenge of articulating the disruptive model to combat a very complex disease and stakeholder ecosystem was what Schultz & Williams set out to address. At the request of the Chief Operating Officer and Chief Development Officer, S&W worked to establish a base line Case for Support and Message Guide that would be simple, clear, impactful and compelling to which donors would respond. In addition, we were asked to provide top-line development recommendations based on findings.
The Schultz & Williams methodology included a review of all existing fundraising messaging, organizational planning documents and internal communications; six internal interviews with the Board and staff; a visioning session that, for the first time, brought together network leads across the enterprise.
From here, a case for support and message guide were drafted. Nine external interviews were conducted to test the new case in order to make new recommendations. Schultz & Williams’ findings during the projects were:
- Messaging was focused on tactics rather than goals and outcomes.
- There was an emphasis on the networks.
- Language was inward looking rather than focused on the donors’ perspective.
- There was a lack of personal stories in a deeply emotional space.
- There was a lack of a cohesive framework to describe the entire organization and how it worked toward a cure.
- The language used in its communications was technical and not urgent
Schultz & Williams proposed a major shift in thinking and messaging, and focused on creating a distinctive value proposition and a big picture narrative that would articulate the larger goals of the entire organization. Most especially, we felt that the unique value proposition had to shine through the organization’s case. S&W then tested the new case for support and received further input from donors to the organization.
Interviewees had further insights into the messaging challenges of UsAgainstAlzheimer’s. Fundamentally, they asked that the case be made even more simple, compelling, emotional and hopeful. They wanted to put more humanity into the organization, they wanted to know specifically what was being accomplished with more specificity around how dollars raised would be allocated to priority needs. Interviewees asked for a better understanding of how the networks related to the overall organization, and they asked to include personal stories and relay an even more hopeful outlook.
At the completion of our in-depth study of the organization, S&W provided overarching recommendations for development success in the areas of communications/messaging, infrastructure and governance.
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