Top 35 Grant-Giving Disease Foundations: 2015 Edition

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Alex Philippidis Senior News Editor Genetic Engineering & Biotechnology News

These Organizations Combine Their Passion for Patients with Resources for Research

NIH’s yo-yo budgets of recent years have prompted some researchers and institutions to look toward nonprofit disease foundations as one of several alternative funding sources. But even the largest foundations have nowhere near the amount of money available to the agency for funding research. For example, the four Parkinson’s disease groups included on this list spent a combined $74.7 million on research grants and awards—just over half the $140 million that NIH estimates it will spend on Parkinson’s research in the current federal fiscal year.

Some relief may be on the way: Draft versions of the 21st Century Cures Act, a bill now before Congress, include a five-year, $10 billion “NIH Innovation Fund” to be spent on priority areas that include funding young researchers. The bill also reauthorizes NIH funding for the 2016 through 2018 fiscal years with increases each year of $1.5 billion.

With more money potentially available from Washington, it wasn’t surprising earlier this month when many of those foundations were among the 180 academic research institutions, scientific societies, and other organizations that signed a letter to Congress urging passage of the measure.

“The mandatory funding the Innovation Fund provides, coupled with meaningful year over year growth in the Institutes’ baseline budget, will make a profoundly positive difference in the discovery landscape; pushing the boundaries of knowledge wider to reveal new targets for the development and delivery of transformative drugs, biologics and medical devices,” according to the letter, spearheaded by the advocacy group Research!America.

Following is a list of 35 nonprofit disease foundations that give grants and other awards (collaborations, fellowships) for research, ranked by the percentage of total expenses spent on those grants and awards. That’s a change from the 2014 list and 2013 list, when GEN ranked foundations on the percentage of total revenue spent on those grants and awards. However, during challenging years for nonprofits, some foundations can make less in revenue over the previous year, sometimes even less than what they gave out in grants, yet still carry out their programs by drawing upon other assets—a reality ignored by the previous ranking.

Each foundation is listed with its total expenses, total research expenses, amount of research grants and/or awards, and total revenues for its most recent year available. That and other information listed below is furnished by the foundations publicly via audited statements and/or their Form 990s.

The list does not constitute a complete listing of all disease foundations. Also, the list does not include 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.


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

% of total expenses awarded as grants: 80.2%

Year ended June 30, 2014 Total Operating Expenses: $21,048,043

Year ended June 30, 2014, Total Scientific Awards: $16,880,9491

  • Year ended June 30, 2014 Total research expense: $18,199,5482

    • % of research expense awarded as grants: 92.8%

Year ended June 30, 2014 Total Revenue: $16,701,4303

Headquarters: New York City


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

% of total expenses awarded as grants: 79.4%

2013 total expenses: $84,958,053

2013 research expense: $75,314,541

  • 2013 amount of research grant awards: $67,429,325

    • % of research expense awarded as grants: 89.5%

2013 Total Public Support and Revenue: $92,710,405

Headquarters: New York City


#3. National Alliance for Research on Schizophrenia and Depression (d/b/a Brain and Behavior Research Foundation)

% of total expenses awarded as grants: 79.1%

2014 total expenses: $28,671,571

2014 total research grants and awards expense: $24,712,5324

  • Amount of research grants awarded: $22,681,953

    • % of research expense awarded as grants: 91.8%

2014 total support and revenue: $33,037,769

Headquarters: New York City


#4. Melanoma Research Alliance Foundation

% of total expenses awarded as grants: 78.7%

2013 total functional expenses: $10,787,623

2013 total research expenses: $9,723,7715

  • 2013 total research grants: $8,485,101

    • % of research expense awarded as grants: 87.3%

2013 Total revenues, public support and other income: $15,677,071

Headquarters: Washington, DC


#5. Rheumatology Research Foundation

% of total expenses awarded as grants: 76.7%

Year ended June 30, 2014 total expenses: $14,316,619

Year ended June 30, 2014, research and education awards expense: $12,374,840

  • Amount of research awards: $10,982,675

    • % of program services awarded as grants: 88.8%

Year ended June 30, 2014 total unrestricted revenues: $18,555,529

Headquarters: Atlanta


#6. Alzheimer’s Drug Discovery Foundation

% of total expenses awarded as grants: 60.2%

2013 total expenses: $11,860,806

2013 research expense: $7,707,6496

  • Amount of research grants awarded: $7,137,0906

    • % of program services awarded as grants: 92.6%

2013 Total Support and Revenues: $13,472,636

Headquarters: New York City


#7. Brain Research Foundation

% of total expenses awarded as grants: 53.4%

Year ended June 30, 2014 total expenses: $2,348,618

Year ended June 30, 2014 total functional expenses, research grant programs: $1,395,933

  • Amount of research grants awarded: $1,254,3967

    • % of research expense awarded as grants: 89.9%

Year ended June 30, 2014 total revenue: $2,842,895

Headquarters: Chicago, IL


.#8. Parkinson’s Disease Foundation

% of total expenses awarded as grants: 49.6%

Year ended June 30, 2013 total operating expenses: $9,990,753

Year ended June 30, 2013, total research expense: $5,934,056

  • Amount of research grants awarded: $4,955,8208

    • % of program services awarded as grants: 83.5%

Year ended June 30, 2013 total operating support and revenue: $10,101,648

Headquarters: New York City


#9. Cystic Fibrosis Foundation

% of total expenses awarded as grants: 46.4%

2013 total expenses: $190,330,325

2013 medical programs expense: $134,684,528

  • Amount of research grants awarded: $88,285,6509

    • % of program services awarded as grants: 65.5%

2013 total revenue: $405,530,384

Headquarters: Bethesda, MD


#10. JDRF10

% of total expenses awarded as grants: 45.8%

Year ended June 30, 2014, total expenses: $214.896 million

Year ended June 30, 2014, research, net expense: $119.604 million

  • Amount of research grants awarded: $98,317,342

    • % of program services awarded as grants: 82.2%

Year ended June 30, 2014, total public support and revenue: $225.228 million

Headquarters: New York City


#11. Foundation Fighting Blindness

% of total expenses awarded as grants: 42.2%

Year ended June 30, 2014 total expenses: $30,166,590

Year ended June 30, 2014, total research expense: $18,639,12411

  • Amount of research grants awarded: $12,720,76712

    • % of Research Expense Awarded as Grants: 68.2%

Year ended June 30, 2014, total revenue and support: $42,286,470

Headquarters: Columbia, MD


#12. American Association for Cancer Research13

% of total expenses awarded as grants: 35.4%

Year ended June 30, 2014 total expenses: $66,801,555

Year ended June 30, 2014 total research expense: $26,050,745

  • Amount of research grants awarded: $23,633,181

    • % of research expense awarded as grants: 90.7%

Year ended June 30, 2014 total revenue and support: $70,246,701

Headquarters: Philadelphia


#13. Hereditary Disease Foundation

% of total expenses awarded as grants: 32.1%

2013 total expenses: $2,207,310

2013 total research program service expense: $1,765,714

  • Amount of research grants awarded: $708,671

    • % of research program service expense awarded as grants: 40.1%

2013 total revenue and support: $2,352,394

Headquarters: New York City


#14. Crohn’s & Colitis Foundation

% of total expenses awarded as grants: 31.1%

2013 total expenses: $53,307,072

2013 total research expense: $23,298,491

  • Amount of research grants awarded: $16,592,814

    • % of research expense awarded as grants: 71.2%

Year ended June 30, 2014 total contributions, grants and other income and support: $67,299,888

Headquarters: New York City
 


#15. PKD Foundation

% of total expenses awarded as grants: 26.0%

Year ended June 30, 2014 total expenses: $7,279,341

Year ended June 30, 2014 research expense: $2,495,467

  • Amount of Research Grants Awarded: $1,894,32314

    • % of Research Expense Awarded as Grants: 75.9%

Year ended June 30, 2014 total revenues, gains, and public support: $7,407,691

Headquarters: Kansas City, MO


#16. Myelin Repair Foundation

% of total expenses awarded as grants: 25.6%

Year ended June 30, 2014 total expenses: $6,446,827

Year ended June 30, 2014 total research program services expense: $4,452,060

  • Amount of research grants awarded: $1,648,750

    • % of program services awarded as grants: 37.0%

Year ended June 30, 2014 total revenue and support: $3,642,560

Headquarters: Saratoga, CA


#17. The ALS Association

% of total expenses awarded as grants: 25.4%

Year ended January 31, 2014 total expenses: $26,204,122

Year ended January 31, 2014 research grants expense: $7,170,481

  • Amount of grant awards: $6,652,904

    • % of research Expense Awarded as Grants: 92.8%

Year ended January 31, 2014, total support and revenue: $29,102,318

Headquarters: Washington, DC


#18. Leukemia & Lymphoma Society (LLS)15

% of total expenses awarded as grants: 21.74%16

Year ended June 30, 2014 total expenses: $339.532 million

Year ended June 30, 2014 research expense: $85.034 million

  • Amount of Research Grants Awarded: $73.811 million17

    • % of Research Expense Awarded: 86.8%

Year ended June 30, 2014 total revenue: $327.431 million

Headquarters: White Plains, NY


#19. Chordoma Foundation

% of total expenses awarded as grants: 21.67%18

2013 total expenses: $1,153,605

2013 research expense: $536,76319

  • Amount of Research Grants and Contracts:  $250,00019

    • % of Research Expense Awarded as Grants: 46.6%

2013 total revenue and support: $1,859,476

Headquarters: Durham, NC


#20. American Heart Association

% of total expenses awarded as grants: 21.1%

Year ended June 30, 2014 total expense: $666.332 million

Year ended June 30, 2014 research expense: $145.276 million

  • Amount of Research, Awards and Grants: $140.400 million

    • % of Research Expense Awarded as Grants: 96.6%

Year ended June 30, 2014 Total Revenue: $784.707 million

Headquarters: Dallas


#21. National Multiple Sclerosis Society20

% of total expenses awarded as grants: 17.43%18

Year ended September 30, 2013 total expenses: $250,277,274

Year ended Sept. 30, 2013 research expense: $48,453,715

  • Amount of research and research fellowship grants: $43,624,784

    • % of Research Expense Awarded as Grants: 90.0%

Year ended Sept. 30, 2013 Total revenue and other support: $256,066,854

Headquarters: New York City


#22. Muscular Dystrophy Association

% of total expenses awarded as grants: 17.42%18

2013 total expenses: $148,005,192

2013 research expense: $29,354,830

  • Amount of Research Grants Awarded: $25,783,448

    • % of Research Expense Awarded as Grants: 87.8%

Total Unrestricted Revenues and Support: $150,325,720

Headquarters: Chicago


#23. American Association for the Study of Liver Diseases

% of total expenses awarded as grants: 17.40%18

2013 total expenses: $13,705,762

2013 total research and fellowship awards expense: $2,607,497

  • Amount of awards and grants awarded: $2,385,000

    • % of research expense awarded as grants: 91.5%

2013 total revenue and support: $13,423,370

Headquarters: Alexandria, VA


#24. American Parkinson Disease Association

% of total expenses awarded as grants: 16.9%

Year ended August 31, 2014 total expenses: $8,823,280

Year ended August 31, 2014 research expense: $1,665,906

  • Amount of Research Grants Awarded: $1,491,297

    • % of Research Expense Awarded as Grants: 89.5%

Year ended Aug. 31, 2014 Total Revenue: $10,053,737

Headquarters: Staten Island, NY


#25. American Diabetes Association21

% of total expenses awarded as grants: 16.1%

2013 total expenses: $221.163 million

2013 research expense: $47.653 million

  • Amount of research grants awarded: $35.516 million

    • % of Research Expense Awarded as Grants: 74.5%

2013 total revenues: $221.761 million

Headquarters: Alexandria, VA


#26. The Susan G. Komen Breast Cancer Foundation, dba Susan G. Komen for the Cure22

% of total expenses awarded as grants: 11.8%

Year ended March 31, 2014 total expenses: $278,027,626

Year ended March 31, 2014 research expense: $43,396,973

  • Amount of research awards and grants: $ 32,911,550

    • % of Research Expense Awarded as Grants: 75.8%

Year ended March 31, 2014 total net public support and revenue: $287,409,269

Headquarters: Dallas


#27. Alzheimer’s Foundation of America

% of total expenses awarded as grants: 11.2%

2013 total expenses: $4,444,487

2013 total research expense: $3,756,59723

  • Amount of research grants awarded: $499,950

    • % of program services awarded as grants: 33.1%

2013 total revenue and support: $6,002,524

Headquarters: New York City


#28. Alzheimer’s Association

% of total expenses awarded as grants: 10.44%18

Year ending June 30, 2014 total expenses: $127.084 million

Year ending June 30, 2014 research expenses: $29.147 million

  • Amount of Research Grants Awarded: $13.269 million

    • % of Research Expense Awarded as Grants: 45.5%

Year ending June 30, 2014 Total revenues, gains, and other support: $135.087 million

Headquarters: Chicago


#29. March of Dimes Foundation

% of total expenses awarded as grants: 10.36%18

2013 total expenses: $216.119 million

2013 research and medical support expense: $29.785 million

  • Amount of research and medical support grants and Awards: $22.392 million

    • % of research expense awarded as grants: 75.2%

2013 total revenue: $207.517 million

Headquarters: White Plains, NY


#30. American Cancer Society24

% of total expenses awarded as grants: 10.0%

2013 total expenses: $936.744 million

2013 research expense: $177.489 million

  • Amount of research grants for mission program services: $94.042 million

    • % of research expense awarded as grants: 53.0%

2013 total revenue, gains and other support: $970.504 million

Headquarters: Atlanta


#31. National Parkinson Foundation

% of total expenses awarded as grants: 6.9%

Year ended June 30, 2014 total expenses: $12,048,047

Year ended June 30, 2014 research expense: $1,590,528

  • Amount of research grants awarded: $829,141

    • % of research expense awarded as grants: 52.1%

Year ended June 30, 2014 total revenue and public support: $11,889,649

Headquarters: Miami


#32. Arthritis Foundation25

% of total expenses awarded as grants: 6.2%

2013 total expenses: $100,412,984

2013 total research expense: $9,429,117

  • Amount of research grants and awards: $6,183,535

    • % of research expense awarded as grants and awards: 65.6%

2013 total revenues, gains, and public support: $98,065,447

Headquarters: Atlanta


#33. Asthma and Allergy Foundation of America

% of total expenses awarded as grants: 4.0%

2013 total expenses: $3,532,098

2013 total research expense: $428,753

  • Amount of research grants and assistance awarded: $140,000

    • % of program services awarded as grants: 32.7%

2013 total revenue and support: $3,944,894

Headquarters: Landover, MD


#34. National Hemophilia Foundation

% of total expenses awarded as grants: 3.7%

2013 total expenses: $13,900,572

2013 total research expense: $1,024,941

  • Amount of research grants awarded: $516,167

    • % of program services awarded as grants: 50.4%

2013 total support and revenue: $15,666,762

Headquarters: New York City


#35. American Liver Foundation

% of total expenses awarded as grants: 3.2%

Year ended Sept. 30, 2013 total expenses: $6,941,626

Year ended Sept. 30, 2013 total research expense: $505,152

  • Amount of research grants awarded: $223,454

    • % of program services awarded as grants: 44.2%

Year ended Sept. 30, 2013 total revenues, gains, losses, and other support: $7,210,089

Headquarters: New York City

 

 







1 Includes Fellowship awards for postdocs ($9,315,426); Clinical investigator awards for early-career physician-scientists ($3,830,788); Rachleff innovation awards for “creative thinkers with ‘high risk/high reward idea 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 ($2,263,106); Sohn pediatric awards for basic and translational research into treatments for children and young adults by “scientists committed to saving children from cancer” ($971,899); and Dale Frey awards given to “two to three of the most outstanding fellows” ($499,730).
2 Research expense figure from the Foundation’s Form 990 for the year ended June 30, 2014, and is itemized into: Fellowships awards ($10,043,069); Clinical investigator awards for early-career physician-scientists ($4,130,017); Rachleff innovation awards for “creative thinkers with ‘high risk/high reward idea 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 ($2,439,881); Sohn pediatric awards for basic and translational research into treatments for children and young adults by “scientists committed to saving children from cancer” ($1,047,816); and Dale Frey awards given to “two to three of the most outstanding fellows” ($538,765).
3 Total revenue figure from the Foundation’s Form 990 for the year ended June 30, 2014 — www.damonrunyon.org/about_us/financial_information
4 In addition to research grants and awards, includes four program support expenses—Research awards and prizes ($304,871), research newsletters, brochures, and annual reports ($261,570), research events and receptions ($186,219), and research symposia ($54,219). Also includes $1,223,700 in services contributed by the Foundation’s Scientific Council, a group of scientists who are leaders in neuroscience and psychiatry: “These volunteers primarily review research grants and projects on behalf of the Foundation.”
5 Figure reflects total program services spending as included on Form 990
6 Grant award and research expense figures furnished by the association on its Form 990 for 2013. 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.”
7 Figure furnished in Form 990, where it was detailed as including “startup money for innovative neuroscience research projects across the broad spectrum of these illnesses, including but not limited to ALS (Lou Gehrig’s Disease), Alzheimer’s disease, attention deficit disorder, autism, bipolar disorder, depression and anxiety, epilepsy, head injuries, Parkinson’s disease, schizophrenia and stroke.
8 Figure included on Foundation’s Form 990 for 2013, and consists of $3,376,445 in grants to institutions, and $1,579,375 in grants to individuals/programs.
9 Figures furnished in consolidated financial statements and include four award and grant programs: Therapeutics Development Program awards ($71,198,245), clinical research grants ($7,523,368), research grants ($7,263,268), and clinical and research fellowship grants ($2,300,769)
10 Organization rebranded itself in 2011 by dropping its previous name of Juvenile Diabetes Research Foundation, in part to reflect that the organization helps people with type 1 diabetes live healthier, easier, and safer lives until a cure emerges; and that it serves people of all ages, and all stages of the disease. See: jdrf.org/2011/11/jdrf-rebrand
11 Figure furnished in annual financial report and includes $16,006,564 in “grants and clinical trial related costs”
12 Figure furnished in Form 990, which also listed $14,368,147 in related expenses.
13 Includes The AACR Foundation for the Prevention and Cure of Cancer
14 Includes Grants and sponsorships ($1,482,779) and external R&D funding ($411,544), furnished in Statements of Functional Expenses for the year ending June 30, 2014
15 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.
16 Percentage given to two decimal places in order to avoid a “tie” ranking
17 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.
18 Percentage given to two decimal places in order to avoid a “tie” ranking
19 Research grant award and research expense figures furnished by the foundation on its Form 990 for 2013
20 Figures include Home Office and chapters.
21 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.
22 Figures include both the headquarters and its affiliates, which numbered 117 last year and 119 in 2013.
23 Figure furnished on Form 990 and reflects total program service expense. The Foundation’s Annual Report for 2013 did not detail program service expense, and an audited statement was unavailable through the Foundation’s website
24 Figures include the American Cancer Society, Inc., Cancer Action Network, and ACS Puerto Rico.
25 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.

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