Top 30 Grant-Giving Disease Foundations: 2014 Edition

Alex Philippidis Senior News Editor Genetic Engineering & Biotechnology News

Find out which organizations have the biggest hearts (and wallets).

Following is a list of 30 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. 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 consolidated financial statements, which combine the results of numerous entities overseen by these institutions, although some information on research expenses and/or awards came from the Form 990s filed by each entity with the IRS.

As NIH’s budget yo-yo’ed over the past decade, declining some years and staying flat others, numerous observers opined that disease foundations could help pick up the resulting funding slack. Yet over the past year, seven of 20 organizations listed last year by GEN have reduced their spending for research grants and other awards—and of the 10 organizations new to this year’s list, four reduced research spending year over year.

While the reasons may vary from organization to organization, they suggest that disease foundations alone won’t make up for what the NIH has taken away. Yet the foundations offer valuable help to researchers—not just a shower of cash, but targeted funding programs and perhaps most important, communities with which to share knowledge and collaborate on future studies. Their role in funding research can be expected to grow in coming years.

#30. Asthma and Allergy Foundation of America

% of Revenues Awarded as Grants: 3.7%

2012 Total Revenue and Support: $3,207,492

2012 Research Expense: $526,821

• Research Grants and Assistance: $120,000
• % of Research Expense Awarded as Grants: 22.8%

Headquarters: Landover, MD

#29. National Parkinson Foundation

% of Revenues Awarded as Grants: 6.2%

Year ended June 30, 2013, Total Revenue and Public Support: $9,869,370

Year ended June 30, 2013, Research Expense: $1,254,976

• Amount of Research Grants Awarded: $615,814
• % of Research Expense Awarded as Grants: 49.1%

Headquarters: Miami, FL

#28. Children’s Liver Disease Foundation¹

% of Revenues Awarded: 6.6%

Year Ended March 31, 2013, Total Incoming Resources: $2,784,035 (£1,656,717)

Year Ended March 31, 2013, Research Grants and Expenditure: $294,713 (£175,377)²

• Amount of Research Grants Awarded: $184,851 (£110,000)³
• % of Research Expense Awarded as Grants: 62.7%

Headquarters: Birmingham, U.K.

#27. American Liver Foundation

% of Revenues Awarded as Grants: 7.0%

Year ended September 30, 2013, Total Revenues, Gains, Losses, and Other Support: $7,210,089

Year ended September 30, 2013, Scientific Awards Expense: $505,152

• Amount of Scientific Awards and Grants: $223,454
• % of Research Expense Awarded as Grants: 44.2%

Headquarters: New York, NY

#26. March of Dimes Foundation⁴

% of Revenues Awarded as Grants: 10.8%

2012 Total Revenue: $209.981 million

2012 Research and Medical Support Expense: $30.360 million

• Amount of Research and Medical Support Grants and Awards: $22.613 million
• % of Research Expense Awarded as Grants: 74.5%

Headquarters: White Plains, NY

#25. Arthritis Foundation⁵

% of Revenues Awarded as Grants: 10.9%

2012 Total Revenues, Gains, and Public Support: $94,047,956

2012 Research Expense: $13,454,241

• Amount of Research Grants and Awards: $10,204,609
• % of Research Expense Awarded as Grants: 75.8%

Headquarters: Atlanta, GA

#24. American Cancer Society⁶

% of Revenues Awarded as Grants: 11.5%

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

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

• Amount of Research Grants for Mission Program Services: $106.882 million
• % of Research Expense Awarded as Grants: 66.7%

Headquarters: Atlanta, GA

#23. The Susan G. Komen Breast Cancer Foundation, dba Susan G. Komen for the Cure⁷

% of Revenues Awarded as Grants: 11.6%

Year ended March 31, 2013, Total Net Public Support and Revenue: $325,202,243

Year ended March 31, 2013, Research Expense: $49,526,380

• Amount of Research Awards and Grants: $37,786,227
• % of Research Expense Awarded as Grants: 76.3%

Headquarters: Dallas, TX

#22. Chordoma Foundation

% of Revenues Awarded as Grants: 13.4%

2013 Total Revenue and Support: $1,859,476

2013 Research Expense: $536,763⁸

• Amount of Research Grants and Contracts:  $250,000⁸
• % of Research Expense Awarded as Grants: 46.6%

Headquarters: Durham, NC

#21. American Diabetes Association⁹

% of Revenues Awarded as Grants: 15.1%

2012 Total Revenues: $228.492 million

2012 Research Expense: $45.376 million

• Amount of Research Grants Awarded: $34.540 million
• % of Research Expense Awarded as Grants: 76.1%

Headquarters: Alexandria, VA

#20. American Parkinson Disease Association

% of Revenues Awarded as Grants: 16.6%

Year ended August 31, 2013, Total Revenue: $8,871,339

Year ended August 31, 2013, Scientific Awards Expense: $1,599,057

• Amount of Research Grants Awarded: $1,472,147
• % of Research Expense Awarded as Grants: 92.1%

Headquarters: Staten Island, NY

#18 (tie). National Multiple Sclerosis Society¹⁰

% of Revenues Awarded as Grants: 17.7%

Year ended September 30, 2012, Total Support Revenue and Reclassification: $216,363,554

Year ended September 30, 2012, Research Expense: $43,255,235

• Amount of Research and Research Fellowship Grants: $38,348,183
• % of Research Expense Awarded as Grants: 88.7%

Headquarters: New York, NY

#18 (tie). American Heart Association¹¹

% of Revenues Awarded as Grants: 17.7%

Year ended June 30, 2013, Total Revenue: $686.538 million

Year ended June 30, 2013, Research Expense: $133.628 million

• Amount of Research, Awards, and Grants: $121.647 million
• % of Research Expense Awarded as Grants: 91.0%

Headquarters: Dallas, TX

#17. PKD Foundation

% of Revenues Awarded: 18.3%

Year Ended June 30, 2013, Total Revenues, Gains, and Public Support: $9,247,810

Year Ended June 30, 2013, Research Expense: $2,219,337

• Amount of Research Grants Awarded: $1,696,916¹²
• % of Research Expense Awarded as Grants: 76.5%

Headquarters: Kansas City, MO

#16. Muscular Dystrophy Association¹³

% of Revenues Awarded as Grants: 21.8%

2012 Total Unrestricted Revenues and Support: $159,007,986

2012 Research Expense: $38,447,079¹³

• Amount of Research Grants Awarded: $34,624,936¹³
• % of Research Expense Awarded as Grants: 90.1%

Headquarters: Tucson, AZ

#15. Alzheimer’s Association

% of Revenues Awarded as Grants: 22.9%

Year Ending June 30, 2013, Total Revenues, Gains, and Other Support: $123.675 million

Year Ending June 30, 2013, Research Expense: $28.323 million

• Research Grants and Funded Research: $15.069 million
• % of Research Expense Awarded as Grants: 53.2%

Headquarters: Chicago, IL

#14. The ALS Association

% of Revenues Awarded: 23.3%

Year Ended June 30, 2013, Total Support and Revenue: $25,744,512

Year Ended June 30, 2013, Research Grants Expense: $6,616,367

• Amount of Research Grants Awarded: $5,993,945
• % of Research Expense Awarded as Grants: 90.6%

Headquarters: Washington, DC

#13. Leukemia & Lymphoma Society (LLS)¹⁴

% of Revenues Awarded: 23.5%

Year Ended June 30, 2013, Total Revenue: $314.315 million

Year Ended June 30, 2013, Research Expense: $79.234 million

• Amount of Research Grants Awarded: $73.811 million¹⁵
• % of Research Expense Awarded: 93.2%

Headquarters: White Plains, NY

#12. Cystic Fibrosis Foundation¹⁶

% of Revenues Awarded as Grants: 24.8%

2012 Total Revenue: $297,680,022

2012 Medical Programs Expense: $114,438,974

• Amount of Research Grants Awarded: $73,801,604¹⁷

• % of Research Expense Awarded as Grants: 64.5%

Headquarters: Bethesda, MD

#11. Crohn’s & Colitis Foundation

% of Revenues Awarded as Grants and Awards: 27.1%

2012 Total Contributions, Grants, and Other Income and Support: $55,618,638

2012 Research Expense: $16,811,162

• Amount of Research Grants and Awards, Net: $15,052,586
• % of Research Expense Awarded as Grants and Awards: 89.5%

Headquarters: New York, NY

#10. Foundation Fighting Blindness

% of Revenues Awarded as Grants: 32.3%

Year Ended June 30, 2013, Total Revenue and Support: $44,754,198

Year Ended June 30, 2013, Grants and Clinical Trial Related Costs: $17,502,363

• Amount of Research Grants Awarded: $14,408,070
• % of Research Expense Awarded as Grants: 82.3%

Headquarters: Columbia, MD

#9. Brain Research Foundation

% of Revenues Awarded: 35.8%

Year Ended June 30, 2013, Total Revenue, Gains, and Other Support: $2,776,700

Year Ended June 30, 2013, Program Services Expense: $1,266,474

• Amount of Research Grants Awarded: $992,780
• % of Research Expense Awarded as Grants: 78.4%

Headquarters: Chicago, IL

#8. Myelin Repair Foundation

% of Revenues Awarded as Grants: 37.9%

Year Ended June 30, 2013, Total Revenue and Support: $4,617,385

Year Ended June 30, 2013, Total Research Program Services Expense: $4,259,027

• Amount of Research Grants Awarded: $1,749,400
• % of Research Expense Awarded as Grants: 41.1%

Headquarters: Saratoga, CA

#7. Parkinson’s Disease Foundation

% of Revenues Awarded: 49.1%

Year Ended June 30, 2013, Total Operating Support and Revenue: $10,101,648

Year Ended June 30, 2013, Research Expense: $5,934,056

• Amount of Research Grants Awarded: $4,955,820¹⁸
• % of Research Expense Awarded as Grants: 83.5%

Headquarters: New York, NY

#6. Juvenile Diabetes Research Foundation

% of Revenues Awarded: 51.5%

Year Ended June 30, 2013, Total Public Support and Revenue: $205.972 million

Year Ended June 30, 2013, Research, Net Expense: $123.361 million

• Amount of Research Grants Awarded: $106.005 million
• % of Research Expense Awarded as Grants: 85.9%

Headquarters: New York, NY

#5. Alzheimer’s Drug Discovery Foundation

% of Revenues Awarded: 60.2%

2012 Total Support and Revenues: $12,393,897

2012 Program Services Expense: $7,846,776¹⁹

• Amount of Research Grants Awarded: $7,462,473¹⁹
• % of Research Expense Awarded as Grants: 95.1%

Headquarters: New York, NY

#4. The Michael J. Fox Foundation for Parkinson’s Research

% of Revenues Awarded: 63.0%²⁰

2012 Total Public Support and Revenue: $87,836,044

2012 Program Services Expense: $62,934,419²¹

• Amount of Research Grant Awards: $55,356,721
• % of Program Services Expense Awarded as Grants: 88.0%^20,21

Headquarters: New York, NY

#3. Rheumatology Research Foundation

% of Revenues Awarded: 65.9%

Year Ended June 30, 2013, Total Revenues: $16,696,601²²

Year Ended June 30, 2013, Combined “Research and Education” Expense: $12,182,322

• Amount of Research Awards: $11,006,968
• % of “Research and Education” Expense Awarded as Grants: 90.4%

Headquarters: Atlanta, GA

#2. Cancer Research Fund of the Damon Runyon-Walter Winchell Foundation

% of Revenues Awarded: 73.6%

Year Ended June 30, 2013, Total Operating Revenue: $16,771,403

Year Ended June 30, 2013, Research Expenses: $13,560,393²³

• Amount of Research Awards: $12,346,441²⁴
• % of Research Expense Awarded as Grants: 89.5%

Headquarters: New York, NY

#1. Melanoma Research Alliance Foundation

% of Revenues Awarded: 85.5%

2012 Total Revenues, Public Support and Other Income: $8,692,431

2012 Research Expense: $8,407,573

• Amount of Research Grants Awarded: $7,431,733
• % of Research Expense Awarded as Grants: 88.4%

Headquarters: Washington, DC

Notes:
¹ Consolidated financial statements comprise Children’s Liver Disease Foundation and its trading subsidiary, CLDF Limited.
² The foundation broke down this expenditure into its components, which include $72,895 (£43,376) in staff costs, $27,040 (£16,090) in support costs, and $9,934 (£5,911) in unspecified “general research costs”.
³ Consists of CLDF Collaborative grant with CORE—joint project in hepatology, $168,046 (£100,000) and Small Grants Program, $16,805 (£10,000). The $168,046 (£100,000) is part of a total $874,243 (£520,211) in accrued funding from six combined present and past research grants that remained unspent at the end of the foundation’s fiscal year.
⁴ Figures include the foundation’s National Office and its 51 chapters.
⁵  Figures for the Arthritis Foundation include its National Office and 12 chartered entities located throughout the U.S. The chartered entities consist of 10 regional units and two chapters.
⁶ Figures include the Society (National Home Office), Foundation, Cancer Action Network, and Chartered Divisions.
⁷ Figures include both the headquarters and its affiliates, which numbered 119 last year and 120 in 2012.
⁸ Research grant award and research expense figures furnished by the foundation on its Form 990 for 2013.
⁹ 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.
¹⁰ Figures include home office and chapters.
¹¹ Figures include the headquarters or “National Center,” affiliates and all components of the association and its division, the American Stroke Association.
¹² Includes external R&D funding ($1,409,778) and grants and sponsorships ($287,138).
¹³ Research grants awarded and research expense figures furnished by the association on its Form 990 for 2012.
¹⁴ Figures include the Home Office of LLS and its 56 chapters in the United States, LLSC and its five chapters in Canada, and LLS’ not-for-profit affiliates, the Leukemia & Lymphoma Society Research Programs and the Leukemia & Lymphoma Society Research Foundation.
¹⁵ Research consists of $58.899 million in traditional “Awards and Grants” to researchers, as well as $14.912 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.
¹⁶ Figures include the Foundation and all of its chapters; Cystic Fibrosis Foundation Therapeutics; Cystic Fibrosis Services; the Cystic Fibrosis Patient Assistance Foundation; and the Cystic Fibrosis Foundation Pharmacy. During 2012, the Foundation completed its sale of Pharmacy operations, recording a gain of $27,022,449 after selling an 80% stake to an undisclosed “unrelated third party” buyer. The Foundation retains the remaining 20% interest in Cystic Fibrosis Foundation Pharmacy (CFFP), totaling $2,286,043.
¹⁷ Sum of four award and grant programs: Therapeutics Development Program awards, which support activities related to cystic fibrosis drug discovery through drug development and clinical evaluation ($57,051,302); research grants ($8,712,550), clinical research grants ($5,969,233), and clinical and research fellowship grants ($2,068,519).
¹⁸ Includes $3,376,445 in grants to institutions, and $1,579,375 in grants to individuals/programs.
¹⁹ Grant award and program services figures furnished by the association on its Form 990 for 2012. The foundation does not furnish audited financial statements on its website, but included unaudited financial information within its 2012 annual report, which noted: “Audited financials available upon request.”
²⁰ The foundation’s web site states that “89 cents of every dollar goes to research programs” (See: https://www.michaeljfox.org/page.html?foundation-financials). That figure is derived by dividing the complete Program Services Expense of $62,934,419 by the foundation’s total expenses of $70,540,350.
²¹ Both the foundation’s audited financial statement and its Form 990 placed research grant awards as a component of program services, without providing a separate research expenses line. Such a line could have included research-specific line items contained within the broader program services entry, such as the cost of scientific meetings ($898,350), professional fees ($509,608), and research advisors ($161,436).
²² Includes total unrestricted revenues of $14,853,546, and change in temporarily restricted net assets of $1,843,055.
²³ Research expense figure from the foundation’s Form 990 for the year ended June 30, 2013. The foundation’s program services line, which appears on its audited financial statement, includes among expenses advisory committee and award panel services ($472,892, which included $229,100 in donated services for 2013), a fellows retreat ($105,469) and professional fees ($55,059).
(24) Includes Fellowships for postdocs ($4,922,775); clinical investigator awards for early-career physician-scientists ($3,408,529); Rachleff innovation awards for “creative thinkers with ‘high risk/high reward ideas that have the potential to significantly impact our understanding of and/or approaches to the prevention, diagnosis or treatment of cancer, but lack sufficient preliminary data to obtain traditional funding’” ($3,142,448); Sohn pediatric awards for basic and translational research into treatments for children and young adults by “scientists committed to saving children from cancer” ($672,689); and Dale Frey awards consisting of $100,000 each to two or three of the most outstanding fellows ($200,000).