In November 2014, the New York Times ran a front-page article on the Cystic Fibrosis Foundation’s sale of the rights to the royalties of several cystic fibrosis (CF) drugs to a private firm for an astounding $3.3 billion. This transaction once again focused attention on the CF Foundation—a nonprofit that has been making headlines for its medical breakthroughs since the 1980s, when a foundation-funded team led by Dr. Francis Collins, the current director of the National Institutes of Health, discovered the gene for CF.

In January, President Obama highlighted CF research advances in his State of the Union Address, and then hosted a White House reception with CF Foundation leaders and a patient who has benefited from the newly developed drugs. Harvard Business School has described the foundation’s venture philanthropy business model in two case studies, with one focusing on the foundation’s success in investing private donations in research collaborations between industry and academia to develop early stage, high-risk therapies.

While most of the focus to date has been on the CF Foundation’s research program, very little is known about its fundraising program, and just how the foundation generated the large donations needed to accelerate research advances. A March 2014 New York Times article on the impact of billionaires on scientific discovery mentioned how the foundation’s Milestones to a Cure campaign was the first “campaign for a cure” to have major success, but it did not describe the reasons, except to highlight its ability to attract wealthy donors. Milestones to a Cure raised more than $175 million in major gifts for CF research from 2004-2010 and raised the bar of expectations among many disease-specific foundations that they could do the same.

So how did a foundation with a small patient population (only 30,000 individuals in the United States) raise large donations for highly speculative clinical research? 

Fundraising campaigns like Milestones to a Cure are dependent on the strength of the “four pillars of fundraising”: case for support, leadership, donors, and fundraising systems. At the beginning of the campaign, all four of these pillars were either in place or in development. 

For decades, the CF Foundation demonstrated that its investment in research was paying off through the discovery of the gene, FDA-approval of symptom controlling therapies, and the discovery of compounds that could affect the basic defect of CF. In 2004, a strategic plan determined that the foundation would need an additional $150 million to $200 million over five years to develop those promising compounds. So, the case was simple: Major giving donations at this critical time would allow for the development of potentially life-saving therapies.

The foundation’s leadership (board and management) determined that it needed a major giving campaign based on successful university models to close the funding gap. The foundation’s enormously successful grassroots and special-event fundraising programs would not be sufficient to meet current demands. A small group of board members and leading volunteers quickly formed a national campaign committee, ensuring that there would be coverage across important geographic regions and business communities (including finance, industry, and entertainment). The chair, chosen unanimously by the committee, was a charismatic entrepreneur who was masterful in drawing others into the campaign, working with staff, and, most importantly, raising funds.

The campaign benefited from the donor pool built over decades of running walks, special events, and galas. The leadership knew that the executive directors of the nearly 60 chapters were critical to identifying individuals who could make major gifts and made two important decisions. First, the organization would not shift gifts from one revenue stream (for example, a gala) to the campaign; major gifts had to be a net increase in giving. Second, the foundation would credit major gifts to the chapters, not the national office. This ensured that there was buy-in from the executive directors, who were incentivized to work with the major giving team at the national office to build the prospect pool.

Ensuring that all fundraising systems were in place to build and monitor progress of the campaign was critical. Once again, the leadership made the necessary investments, hiring a team of highly experienced major gifts officers and support staff, providing for a sufficient travel budget, updating its Moves Management program, and committing resources for marketing and communications (case for support, brochures, newsletters, recognition materials). The Milestones Campaign became a priority program of the foundation, led by the vice president of major giving who was entrusted to interact with board members and volunteers on behalf of management. One board member served as campaign liaison, asking each member to commit to the campaign. The CEO and COO committed considerable time to cultivation and solicitation, as did other members of the leadership team. Finally, many leading donors of the CF community, who long understood the risks of medical research, continued their grassroots and event giving, in addition to making major gifts to the campaign.

Many disease-specific foundations have had success with major giving. While it is possible for a campaign to achieve its goal without all the “fundraising pillars” in place, the Milestones Campaign demonstrates that careful attention to them can result in tremendous giving for mission goals. Interestingly, the drugs the foundation monetized for $3.3 billion were discovered by research funded in part by a $20 million gift from the Bill and Melinda Gates Foundation, demonstrating that major gifts provide a great return on investment for fundraising and programs.

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