Following is a list of 20 nonprofit disease foundations that give grants and other awards (collaborations, fellowships) for research, ranked by the percentage of total revenues spent on those grants and awards. The list includes disease foundations with research expenses of at least $1 million. Not included are Section 501(c)(3) exempt private foundations (Bill & Melinda Gates, Clinton) or institutions that care for patients as well as carry out research (Dana-Farber, Mayo Clinic) or research institutes. Figures for each disease foundation are based on their audited financial statements, which typically consolidate the results of numerous entities overseen by these institutions, as opposed to the Form 990s filed by each entity with the IRS.
If there’s one truth reflected by this list, it is that disease foundations that are the oldest, and those that generate the most revenue, aren’t necessarily the biggest funders of grants and other awards for research—let alone the most efficient funders, when measured as a percentage of revenue, or in some cases, as a percentage of revenue expenses. Both percentages are recorded in this list. A notable beacon of efficiency is the Michael J. Fox Foundation, which gives no less than 82.6% of its total revenues as research grants and awards. Significantly, only two other disease foundations listed spent more than half of the money they took in on research.
The list also reflects the fractiousness of foundations for some disease categories, especially Parkinson’s disease, which has no fewer than four foundations on this list focused on the disorder: Michael J. Fox, Parkinson’s Disease Foundation, American Parkinson Disease Association, and National Parkinson Foundation. Whether a single group would fare better at raising funding and distributing more of it toward research is a fair subject for debate.
With government funding for basic research threatening to shrink in coming years as lawmakers cut federal spending—or let sequestration do it for them—investigators will look more to the disease foundations, among other institutions, for funds that will enable them to carry out their all-important work.