PLATINUM2024

The Leukemia & Lymphoma Society

aka LLS   |   Rye Brook, NY   |  www.LLS.org

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 info

2001

President and CEO

E. Anders Kolb MD

Main address

3 International Drive Suite 200

Rye Brook, NY 10573 USA

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Formerly known as

Leukemia Society of America

EIN

13-5644916

NTEE code info

Cancer Research (H30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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

Population(s) Served
People with diseases and illnesses
Caregivers

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.

Population(s) Served
People with diseases and illnesses
Caregivers

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

Population(s) Served
People with diseases and illnesses
Caregivers

Spanning over three decades, Team In Training started a revolution that changed endurance sports forever. Since inception in 1988, Team In Training has raised more than $1.5 billion, trained more than 650,000 people, and helped The Leukemia & Lymphoma Society (LLS) invest nearly $1.3 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/

Population(s) Served

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 140 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/

Population(s) Served

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/

Population(s) Served
People with diseases and illnesses
Caregivers
People with diseases and illnesses
Caregivers
People with diseases and illnesses
Caregivers
People with diseases and illnesses
Caregivers

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

Population(s) Served
Caregivers
Families
People with diseases and illnesses

Formerly the iconic Students of the Year campaign, Student Visionaries of the Year is a groundbreaking philanthropic leadership development program for high school students. Every year, courageous young leaders embark on an exciting 7-week journey with a goal to create a world without blood cancers, striving to earn the Student Visionary of the Year title. There are many ways to participate in Student Visionaries of the Year, visit https://www.llsstudentvisionaries.org/.

Population(s) Served

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

Best Workplace for Innovators 2023

Fast Company

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

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.

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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • 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

  • 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

  • What challenges does the organization face when collecting feedback?

    The people we serve tell us they find data collection burdensome

Financials

The Leukemia & Lymphoma Society
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

The Leukemia & Lymphoma Society

Board of directors
as of 01/18/2024
SOURCE: Self-reported by organization
Board chair

Jeff Sachs

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

Ruben A. Mesa, M.D., FACP

Enterprise Cancer Service Line Atrium Health

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

Leroy M. Ball

Koppers

Mark J. Barrenechea

OpenText

Ari Melnick, M.D.

Weill Cornell Medicine

Yvette Tremonti

Moffitt Cancer Center

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 9/6/2023

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
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 09/19/2022

GuideStar 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

Data
  • 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.
Policies and processes
  • 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.