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May 28, 2013

Top 20 Grant-Giving Disease Foundations

These generous nonprofits help keep research alive.

Top 20 Grant-Giving Disease Foundations

This list includes disease foundations with research expenses of at least $1 million. [© Dani Simmonds - Fotolia.com]

  • 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.

  • #20. Arthritis Foundation1

    % of Revenues Awarded as Grants: 8.8%

    2011 Total Revenues, Gains, and Public Support: $105.199 million

    2011 Research Expense: $14.244 million

    • Amount of Research Grants Awarded: $9.294 million
    • % of Research Expense Awarded as Grants: 65.2%

    Headquarters: Atlanta, GA

  • #19. National Parkinson Foundation

    % of Revenue Awarded as Grants: 9.8%

    Year Ended June 30, 2012, Total Revenue and Support: $9.245 million

    Year Ended June 30, 2012, Research Expense: $1.561 million

    • Amount of Research Grants and Awards Awarded: $902,784
    • % Awarded as Grants: 57.8%

    Headquarters: Miami, FL

  • #17 (tie). March of Dimes Foundation2

    % of Revenues Awarded as Grants: 11.1%

    2011 Total Revenue: $211.142 million

    2011 Research and Medical Support Expense: $30.853 million

    • Amount of Research Grants Awarded: $23.387 million
    • % Awarded as Grants: 75.8%

    Headquarters: White Plains, NY

  • #17 (tie). American Liver Foundation

    % of Revenue Awarded as Grants: 11.1%

    2011 Total Revenues, Gains, and Other Support: $8.516 million

    2012 Total Research Expense: $2.424 million

    • Amount of Research Grants Awarded: $947,759
    • % Awarded as Grants: 39.1%

    Headquarters: New York, NY

  • #16. American Cancer Society3

    % of Revenue Awarded: 11.5%

    Year Ended August 31, 2012, Total Revenue, Gains, and Other Support: $925.390 million

    Year Ended August 31, 2012, Research Expense: $160.139 million

    • Amount of Research Grants Awarded: $106.882 million
    • % Awarded as Grants: 66.7%

    Headquarters: Atlanta, GA

  • #15. American Parkinson Disease Association

    % of Revenue Awarded as Grants: 15.1%

    2011 Total Revenues: $8.544 million

    Year Ended August 31, 2012, Research Expense: $1.435 million

    • Amount of Research Grants Awarded: $1.293 million
    • % Awarded as Research Grants: 90.1%

    Headquarters: Staten Island, NY

  • #14. Susan G. Komen Breast Cancer Foundation, dba Susan G. Komen for the Cure4

    % of Revenues Awarded as Grants: 15.3%

    Year Ended March 31, 2012, Total Net Public Support & Revenue, HQ, and Affiliates: $398.965 million

    Year Ended March 31, 2012, Research Expense: $70.833 million

    • Amount of Research Grants Awarded: $60.931 million
    • % of Research Expense Awarded as Grants: 86.0%

    Headquarters: Dallas, TX

  • #13. American Diabetes Association5

    % of Revenues Awarded as Grants: 16.1%

    2011 Revenues: $208.533 million

    2011 Research Expense: $44.218 million

    • Amount of Research Grants Awarded: $33.588 million
    • % Awarded as Grants: 76.0%

    Headquarters: Alexandria, VA

  • #12. National Multiple Sclerosis Society6

    % of Revenues Awarded as Grants: 16.4%

    2011 Total Support, Revenue, and Reclassifications: $214.076 million

    Year Ended September 30, 2011, Research Expense: $40.257 million

    • Amount of Research Grants Awarded: $35.273 million
    • % of Research Expense Awarded as Grants: 87.6%

    Headquarters: New York, NY

  • #11. Cystic Fibrosis Foundation7

    % of Revenues Awarded as Grants: 17.9%

    2011 Total Revenue: $304.919 million

    2011 Medical Programs Expense: $264.176 million

    • Amount of Research Grants Awarded: $54.707 million8
    • % Awarded as Research Grants: 20.7%

    Headquarters: Bethesda, MD


Readers' Comments

Posted 06/05/2013 by Erin Stoeber

Your article about the Top 20 Grant-Giving Disease Foundations was very interesting, however it failed to include the Crohn’s & Colitis Foundation of America (CCFA). As one of the largest private funders of IBD research, we feel this is a significant error on your part.

In 2012, we supported 160 new and ongoing grants. We have invested more than $200 million in approximately 1,525 senior research and training grants over the past 45 years. We invested $15.1 million in research in 2012 which would have put us 6th and 7th behind the Parkinson's Foundation. We hope that next year, we will be included in this list. For more information about CCFA, visit ccfa.org.

Posted 05/29/2013 by Stephen Rose

I read with great interest your article titled "Top 20 Grant-Giving Disease Foundations" in the May 28, 2013, issue of Genetic Engineering & Biotechnology News. The Foundation Fighting Blindness is a non-profit organization which, like those highlighted in your article, is dedicated to supporting innovative early and late translational research and clinical trials. We are funding research to find preventions, treatments and cures for inherited orphan retinal degenerative diseases such as retinitis pigmentosa, Usher syndrome (the world's leading cause of deaf-blindness), Stargardt disease (juvenile macular degeneration) and other blinding conditions affecting the back of the eye.
Based on percent of revenue awarded as grants (see statistics below), the Foundation Fighting Blindness would have ranked sixth on your top-twenty list.
% of revenue awarded as grants 41.7%
2012 Total revenue $41.360 million
2012 Research expense $20,075,144
Amount of research grants awarded* $17,245,932
% of research expense awarded as grants 85.9%

Headquarters: Columbia, Maryland


Founded in 1971, the Foundation Fighting Blindness has raised more than $500 million for its mission and, as a result, is at the point of actually restoring sight. In ongoing, landmark clinical trials of a novel gene therapy, which were made possible by decades of Foundation funding, dozens of children and adults have had significant vision restored, including a boy who was able to put away his white cane and play baseball after the treatment. This medical breakthrough has led to additional human gene therapy studies for a variety of retinal diseases.

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