The Leukemia & Lymphoma Society
EIN: 13-5644916
Mission
The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. We exist to find cures and ensure access to treatments for blood cancer patients.
Ruling year
2001
President and CEO
Louis J DeGennaro Ph.D.
Main address
3 International Drive Suite 200
Rye Brook, NY 10573 USA
Formerly known as
Leukemia Society of America
EIN
13-5644916
Health
Patient-centered care
Diseases and conditions
Cancers
Leukemia
Population served
Caregivers
People with diseases and illnesses
NTEE code
Cancer Research (H30)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Affiliations
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
LLS exists to find cures and ensure access to treatments for blood cancer patients. We are the voice for all blood cancer patients and we work to ensure access to treatments for all blood cancer patients.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Policy & Advocacy
LLS’s Policy & Advocacy team is dedicated to removing barriers to care. Critical challenges remain in the development and delivery of new therapies and many blood cancer patients still face significant barriers to accessing the care they need. LLS advocates and mobilizes grassroots support to influence state and federal laws and regulations, ensuring that all blood cancer patients get access to the treatments and care they need. https://www.lls.org/policy-advocacy
Patient Support
As the leading source of free blood cancer information, education and support for patients, survivors, families and healthcare professionals, LLS helps patients navigate their cancer treatments and ensures they have access to quality, affordable and coordinated care. https://www.lls.org/support-resources
The Leukemia & Lymphoma Society® (LLS) is a global leader in the fight against cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.
Research
As a global leader in the fight against cancer, The Leukemia & Lymphoma Society has provided more than $1.6 billion to lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care. Learn more at https://www.lls.org/yearbook
Team In Training
Spanning over three decades, Team In Training started a revolution that changed endurance sports forever. Since inception in 1988, Team In Training has trained more than 650,000 people, and helped The Leukemia & Lymphoma Society (LLS) invest in more than $1.6 billion in research to advance breakthrough cancer treatments that are saving lives today. In addition to marathons, Team In Training's portfolio includes high-caliber events in cycling, hiking and climbing. https://www.teamintraining.org/
Light The Night
Light The Night is a powerful campaign bringing light to the darkness of cancer. One million friends, families and co-workers gather together, carrying illuminated lanterns in 150 inspirational evening walks, to celebrate, honor or remember those touched by cancer. In 2016, Light The Night introduced Random Acts of Light, engaging celebrities and local heroes to surprise people touched by blood cancers with special meetings, to help brighten their lives during a dark time. https://www.lightthenight.org/
Visionaries of the Year
Visionaries of the Year is a truly unique fundraising campaign. In an annual competition in communities across the country, candidates compete in honor of two local blood cancer survivors, by raising funds for LLS. By engaging influential community leaders, Visionaries of the Year taps into the spirit of innovation and entrepreneurship that has allowed LLS to achieve great success in funding groundbreaking research to advance cancer cures. The winners receive LLS's "Visionary of the Year" titles. The individual who has raised the most funds during the ten-week campaign is awarded the prestigious title of 'Visionary of the Year' in their community. Top local fundraisers become eligible to win national titles. https://www.llsvisionaries.org/
Big Climb
As a global leader in the fight against cancer, The Leukemia & Lymphoma Society (LLS) has pioneered several iconic million-dollar campaigns in its 70+ year history, helping the organization invest in more than $1.6 billion in cutting-edge cancer research worldwide. LLS’s latest fundraising innovation, Big Climb, brings thousands of fundraisers and volunteers to the top of iconic buildings across the country in support of new cures for cancer. https://www.lls.org/big-climb
Where we work
Awards
Brands That Matter 2022
Fast Company's
Outstanding Achievement in Public Service, Cancer Research, and Advocacy 2022
American Association of Cancer Research
Innovative Nonprofit of the Year RAISE Award 2022
One Cause Foundation
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Information Specialists Provide Support to Blood Cancer Patients, Families and Caregivers
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people, Terminally ill people, Caregivers, Parents, Adults
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
More than 26,000 interactions between the IRC and patients and caregivers took place, with average call lengths up 30% over 2020.
Total dollars received in contributions
This metric is no longer tracked.Totals By Year
Population(s) Served
Terminally ill people, Chronically ill people
Related Program
Research
Type of Metric
Input - describing resources we use
Direction of Success
Holding steady
Context Notes
In fiscal year 2022, LLS raised $444 million to support our mission and operations.
Number of Facebook followers
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults, Adolescents, Chronically ill people, Terminally ill people, Caregivers
Related Program
Patient Support
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. We exist to find cured and ensure access to treatments for blood cancer patients.
LLS is the world's largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services.
Our key priorities will ensure that The Leukemia & Lymphoma Society helps blood cancer patients live better, longer lives.
What are the organization's key strategies for making this happen?
Research - Through our research agenda, we advance the diagnosis and treatment of blood cancers through continued funding of academic research. Our Therapy Acceleration Program is a strategic initiative to partner with academic research institutions and biotechnology companies to get promising therapies to patients faster.
Patient Services - LLS provides free information and support services to blood cancer patients and their families. Our Information Resource Center is a toll-free call center staffed with master's degree level healthcare professionals armed with up-to-date information about blood cancers and treatment options. The IRC fields approximately 60,000 inquiries a year and performs 6,000 clinical trials searches for patients. Our Co-Pay Assistance Program is designed to help patients afford their health insurance co-pays and insurance premiums. Since its inception in 2007 the co-pay program has provided $240 million in support and helped more than 55,000 patients.
Our Patti Robinson Kaufmann program is a peer-to-peer program in which trained volunteer blood cancer survivors are matched with a newly diagnosed patient to share their experiences; and the Susan Lang Pay-it-Forward Travel Assistance Program helps patients with transportation/travel to help them get to their health care providers for their blood cancer related treatments.
Policy and Advocacy - LLS is dedicated to removing barriers to care for blood cancer patients. Our policy and advocacy team works to secure both federal and state laws to ensure access, by limiting Out of pocket costs for treatments. For example, we have helped pass laws in 20 states ensuring equity in cost-sharing for thousands of patients who rely on orally-administered cancer treatments. LLS has played a critical role in advancing the 21st Century cures bill, designed to accelerate cures through FDA reform.
LLS has built a nationwide grassroots network to empower blood cancer patients and their loved ones to affect real change in treatment and care through: currently more 100,000 grassroots advocates across the country.
Human Resources - Top-grade all talent in LLS; hire, inspire and retain "A" talent for all positions. Transform the People Organization department into a proactive service organization. Strengthen a performance-driven culture. Achieve "best in class" level HR processes from on-boarding to out-placement. Expand diversity from top to bottom.
Finance - Minimize labor-intensive transactions and transaction processing.
Greatly reduce staff time spent gathering, consolidating, forecasting and budgeting, actual and operational data. Provide analyses and predictive models that will help LLS solve problems, gain marketplace advantage, and support new initiatives.
What are the organization's capabilities for doing this?
We are the world's largest voluntary health agency dedicated to research specifically focused on finding cures and better treatments for blood cancer patients. We have local Regions throughout the United States and Canada. With the scope and scale to fund many projects at the same time, LLS supports hundreds of cancer scientists around the world and our network of Regions ensures that patients an families are served throughout the United States and Canada.
What have they accomplished so far and what's next?
LLS's research investment has played a critical role in advancing therapies for blood cancer patients, including targeted and immunotherapies. Five year survival rates have double, tripled and even quadrupled for some types of blood cancers. But more than 1/3 of blood cancer patients still do not live five years after diagnosis and we are determined to change that statistic.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
Our mission directly serves blood cancer patients, their caregivers and families by providing care, educational support, and resources, as well as healthcare providers and researchers, whose cutting-edge blood cancer investigations we are proud to support.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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What significant change resulted from feedback?
From its inception, patients and families have been central to The Leukemia & Lymphoma Society, and are our first consideration in decision-making. We are constantly changing in response to the feedback we receive from those we serve, re-evaluating our programs, educational materials, and services to ensure we are meeting the needs of patients, caregivers, and families at a given time. This was especially true during COVID, when our listening strategies led us to create the largest COVID-19 Patient Registry in existence. We collected data on the experiences of over 6,000 patients serving as “citizen scientists,” to examine the ability of patients to make antibodies to the SARS-CoV-2 vaccine, initiating first-of-its-kind research on COVID-19 vaccine efficacy to facilitate decision-making.
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded
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What challenges does the organization face when collecting feedback?
The people we serve tell us they find data collection burdensome
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2021 info
2.99
Months of cash in 2021 info
4.6
Fringe rate in 2021 info
24%
Funding sources info
Assets & liabilities info
The Leukemia & Lymphoma Society
Revenue & expensesFiscal Year: Jul 01 - Jun 30
SOURCE: IRS Form 990
The Leukemia & Lymphoma Society
Balance sheetFiscal Year: Jul 01 - Jun 30
SOURCE: IRS Form 990
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jul 01 - Jun 30
SOURCE: IRS Form 990
This snapshot of The Leukemia & Lymphoma Society’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
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Business model indicators
| Profitability info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $46,446,637 | $28,355,418 | $34,570,449 | $79,122,377 | $82,476,250 |
| As % of expenses | 15.1% | 8.1% | 9.5% | 20.3% | 23.1% |
| Unrestricted surplus (deficit) after depreciation | $38,966,468 | $22,954,203 | $30,276,964 | $75,519,233 | $78,999,463 |
| As % of expenses | 12.4% | 6.4% | 8.2% | 19.2% | 22.0% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $345,298,600 | $438,854,761 | $396,221,152 | $496,221,309 | $477,663,716 |
| Total revenue, % change over prior year | 27.1% | 27.1% | -9.7% | 25.2% | -3.7% |
| Program services revenue | 1.1% | 2.1% | 3.8% | 3.2% | 2.6% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 0.8% | 1.0% | 1.8% | 1.5% | 0.9% |
| Government grants | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| All other grants and contributions | 89.8% | 94.7% | 92.9% | 85.6% | 92.2% |
| Other revenue | 8.3% | 2.2% | 1.5% | 9.6% | 4.3% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $308,005,844 | $351,049,137 | $363,027,988 | $390,393,306 | $356,371,392 |
| Total expenses, % change over prior year | 24.0% | 14.0% | 3.4% | 7.5% | -8.7% |
| Personnel | 31.8% | 29.6% | 31.2% | 32.4% | 31.9% |
| Professional fees | 8.1% | 8.0% | 9.1% | 9.0% | 10.2% |
| Occupancy | 2.9% | 2.6% | 2.5% | 2.4% | 2.4% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 39.9% | 45.0% | 40.3% | 43.4% | 42.8% |
| All other expenses | 17.3% | 14.8% | 16.8% | 12.7% | 12.7% |
| Full cost components (estimated) info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $315,486,013 | $356,450,352 | $367,321,473 | $393,996,450 | $359,848,179 |
| One month of savings | $25,667,154 | $29,254,095 | $30,252,332 | $32,532,776 | $29,697,616 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $0 | $0 | $4,865,026 | $3,903,267 | $4,878,943 |
| Total full costs (estimated) | $341,153,167 | $385,704,447 | $402,438,831 | $430,432,493 | $394,424,738 |
Capital structure indicators
| Liquidity info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Months of cash | 3.9 | 6.3 | 8.6 | 12.0 | 4.6 |
| Months of cash and investments | 9.5 | 11.6 | 14.1 | 16.7 | 24.1 |
| Months of estimated liquid unrestricted net assets | 4.3 | 4.6 | 5.5 | 7.4 | 10.7 |
| Balance sheet composition info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Cash | $100,001,871 | $184,368,566 | $261,231,114 | $391,104,554 | $135,666,009 |
| Investments | $142,622,574 | $154,961,800 | $164,333,956 | $153,389,627 | $579,965,468 |
| Receivables | $16,228,169 | $32,009,273 | $15,172,625 | $24,021,989 | $13,531,687 |
| Gross land, buildings, equipment (LBE) | $41,166,184 | $45,035,188 | $49,903,950 | $53,740,279 | $18,569,968 |
| Accumulated depreciation (as a % of LBE) | 75.7% | 81.2% | 81.9% | 82.6% | 42.1% |
| Liabilities (as a % of assets) | 44.1% | 38.2% | 40.9% | 37.1% | 30.9% |
| Unrestricted net assets | $120,968,910 | $143,923,113 | $174,200,077 | $249,719,310 | $328,718,773 |
| Temporarily restricted net assets | $28,432,696 | $89,422,942 | $94,191,312 | N/A | N/A |
| Permanently restricted net assets | $2,886,119 | $2,886,319 | $0 | N/A | N/A |
| Total restricted net assets | $31,318,815 | $92,309,261 | $94,191,312 | $116,403,128 | $185,053,725 |
| Total net assets | $152,287,725 | $236,232,374 | $268,391,389 | $366,122,438 | $513,772,498 |
Key data checks
| Key data checks info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President and CEO
Louis J DeGennaro Ph.D.
Louis J. DeGennaro, Ph.D., is president and chief executive officer of The Leukemia & Lymphoma Society (LLS), the world's largest voluntary health agency dedicated to fighting blood cancers. Dr. DeGennaro leads the operations of this $300 million cancer patient advocacy agency with headquarters in Rye Brook, New York.
Dr. DeGennaro has been a member of the LLS executive leadership team since he joined LLS as chief scientific officer in 2005. He was named LLS chief mission officer in 2009, with responsibility for leadership of all of LLS's mission functions, including research, patient education and support, public policy and advocacy. He was named president and CEO in September 2014.
Full bio: https://www.lls.org/leadership/executive-team?src1=22681&src2=
Number of employees
Source: IRS Form 990
The Leukemia & Lymphoma Society
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
The Leukemia & Lymphoma Society
Highest paid employeesSOURCE: IRS Form 990
Compensation data
The Leukemia & Lymphoma Society
Board of directorsas of 02/14/2023
Board of directors data
Jeff Sachs
Francie Heller
Arabesque Asset Management USA
Bart Sichel
Renzo Canetta
Kathleen Meriwether
Lynne F. O'Brien
Marla Persky
Robert Rosen
Greyhawke Capital Advisors LLC
Casey Cunningham
Santé Ventures
Janice L. Gabrilove
Tisch Cancer Institute & Icahn School of Medicine at Mount Sinai
John Greene
Vineti
Ruben A. Mesa
Mays Cancer Center
Richard Rendina
Rendina Healthcare Real Estate
Alessandra Tocco
New York Alternative Investment Roundtable
Freda Wang
Goldman Sachs
Rich Bagger
Rutgers University Eagleton Institute of Politics & Commissioner of the Port Authority of New York and New Jersey
Jennifer Marley
Sklar Wilton & Associates (SW&A)
Jim Reddoch, Ph.D.
Royalty Pharma
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 09/19/2022GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.
Contractors
Fiscal year endingProfessional fundraisers
Fiscal year endingSOURCE: IRS Form 990 Schedule G
Solicitation activities
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