Alex Philippidis Senior News Editor Genetic Engineering & Biotechnology News

These generous nonprofits help keep research alive.

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


#10. American Heart Association9

% of Revenue Awarded: 18.3%

Year Ended June 30, 2012, Total Public Support and Other Revenue: $639.525 million

Year Ended June 30, 2012, Research Expense: $128.525 million

  • Amount of Research Grants and Awards Awarded: $116.872 million
  • % Awarded as Grants: 90.9%

Headquarters: Dallas, TX


#9. The ALS Association

% of Revenues Awarded as Grants: 18.4%

Year Ended January 31, 2012, Total Support and Revenue: $19.043 million

Year Ended January 31, 2012, Research Expense: $3.904 million

  • Amount of Research Grants Awarded: $3.500 million
  • % Awarded as Grants: 89.6%

Headquarters: Washington, DC


#8. Muscular Dystrophy Association

% of Revenues Awarded as Grants: 21.7%

2011 Total Unrestricted Revenues and Support: $156.589 million

2011 Research Expense: $38.126 million

  • Amount of Research Grants Awarded: $33.945 million
  • % Awarded as Grants: 89.0%

Headquarters: Tucson, AZ


#7. Leukemia and Lymphoma Society (LLS)10

% of Revenues Awarded as Grants: 22.4%

Year Ended June 30, 2012, Total Revenue: $305.090 million

Year Ended June 30, 2012, Research Expense: $73.512 million

  • Amount of Research Grants Awarded: $68.398 million11
  • % Awarded as Grants: 93.0%

Headquarters: White Plains, NY


#6. Melanoma Research Alliance Foundation

% of Revenue Awarded as Grants: 24.3%

2011 Total Revenues, Public Support, and Other Income: $21.035 million

2011 Program Services Expense: $6.024 million12

  • Amount of Research Grants Awarded: $5.104 million
  • % Awarded as Grants: 84.7%

Headquarters: Washington, DC


#5. Parkinson’s Disease Foundation

% of Revenue Awarded as Grants: 46.2%

Year Ended June 30, 2011, Total Revenue and Support: $10.284 million

Year Ended June 30, 2011, Research Expense: $5.671 million

  • Amount of Research Grants Awarded: $4.750 million13
  • % Awarded as Grants: 83.8%

Headquarters: New York, NY


#4. Alzheimer’s Drug Discovery Foundation14

% of Revenue Awarded as Grants: 52.0%

2011 Total Support and Revenues: $10.614 million

2011 Total Research Expense: $5.762 million

  • Amount of Research Grants Awarded: $5.522 million
  • % Awarded as Grants: 95.8%

Headquarters: New York, NY


#3. Myelin Repair Foundation

% of Revenue Awarded as Grants: 53.9%

Year Ended June 30, 2012, Total Revenue and Support: $5.328 million

Year Ended June 30, 2012, Research Expense: $4.840 million

  • Amount of Research Grants Awarded: $2.873 million
  • % Awarded as Grants: 59.4%

Headquarters: Saratoga, CA


#2. Juvenile Diabetes Research Foundation

% of Revenues Awarded as Grants: 57.0%

Year Ended June 30, 2012, Total Revenue: $193.039 million

Year Ended June 30, 2012, Research Expense: $123.928 million

  • Amount of Research Grants Awarded: $110.071 million
  • % Awarded as Grants: 88.8%

Headquarters: Norwalk, CT


#1. Michael J. Fox Foundation

% of Revenues Awarded as Grants: 82.6%

2011 Total Revenue: $65.183 million

2011 Research Expense: $59.754 million

  • Amount of Research Grants Awarded: $53.858 million
  • % Awarded as Grants: 90.1%

Headquarters: New York, NY






















Notes:
1 Figures include the Arthritis Foundation, its National Office and 13 “Chartered Entities,” consisting of the 10 regional units and three chapters.
2 Figures include the foundation’s National Office and its 51 chapters.
3 Figures include the Society, its National Home Office, Foundation, Cancer Action Network, and Chartered Divisions. http://www.cancer.org/acs/groups/content/documents/document/acspc-037159.pdf
4 Figures include both the headquarters and its affiliates, which numbered 120 last year and 121 in 2011.
5 Figures include the association, the American Diabetes Association Property Title Holding Corp., and the American Diabetes Association Research Foundation, founded to administer the association’s research program, and ensure the availability of funds to support research.
6 Figures include Home Office and chapters.
7 Figures include the foundation and all of its chapters; Cystic Fibrosis Foundation Therapeutics; Cystic Fibrosis Services; Cystic Fibrosis Foundation Pharmacy; and the Cystic Fibrosis Patient Assistance Foundation.
8 Sum of four award and grant programs: $41.074 million for the Therapeutics Development Program, which supports activities related to cystic fibrosis drug discovery through drug development and clinical evaluation; $7.839 million for research grants; $4.024 million for clinical research grants; and $1.770 million for clinical and research fellowship grants. The largest medical program expense, not included in the grants total, is pharmaceuticals at $158.194 million.
9 Figures include the headquarters or “National Center,” affiliates and all components of the association and its division, the American Stroke Association.
10 Figures include the Home Office of LLS and its 56 chapters in the United States, LLSC and its five chapters in Canada, and LLS’s not for profit affiliates, The Leukemia & Lymphoma Society Research Programs, Inc. and The Leukemia & Lymphoma Society Research Foundation. See http://www.lls.org/content/nationalcontent/pdf/2012annualreport.pdf
11 Research consists of $54.527 million in traditional “Awards and Grants” to researchers, as well as $13.871 million spent under the Therapy Acceleration Program (TAP), which funds investigational new drug-enabling studies and clinical-stage projects in an effort to speed the development of blood cancer treatments and supportive diagnostics. TAP entails creating business alliances with biotechnology and pharmaceutical companies.
12 No separate research expenses figure available
13 Includes $3,279,753 in grants to institutions, and $1,470,069 in grants to individuals/programs.
14 Grant award and expense figures furnished by the foundation on its Form 990 for 2011, while total support and revenue figure disclosed in ADDF’s Annual Report 2011.

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