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THE LEUKEMIA & LYMPHOMA SOCIETY
THE LEUKEMIA & LYMPHOMA SOCIETY
Is this your nonprofit?
501(c)(3) organization
Donations are tax-deductible
https://www.lls.org/
3 INTERNATIONAL DR STE 200
Rye Brook NY 10573-7501
888-557-7177
Rye Brook NY | IRS ruling year: 2001 | EIN: 13-5644916
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.
Founded in 1949 and headquartered in Rye Brook, NY, LLS has 27 regions
throughout the United States and Canada. To learn more, visit www.LLS.org.
Patients should contact the Information Resource Center at (800) 955-4572,
Monday through Friday, 9 a.m. to 9 p.m. ET.
RATING INFORMATION
Great
This charity's score is 96%, earning it a Four-Star rating. If this organization
aligns with your passions and values, you can give with confidence.
This overall score is calculated from multiple beacon scores: 32% Accountability
& Finance, 50% Impact & Results, 7% Leadership & Adaptability, 10% Culture &
Community. Learn more about our criteria and methodology.
Beacon Weights
Beacon Weights
We recognize that not all metrics and beacons equally predict a charity’s
success. The percentage each beacon contributes to the organization’s overall
rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts
when only one, two, or three beacons are earned.
Accountability & FinanceImpact & ResultsLeadership & AdaptabilityCulture &
Community32.5%10%7.5%50%
BeaconWeightAccountability & Finance32.5Impact & Results50Leadership &
Adaptability7.5Culture & Community10
Culture & Community
Impact & Results
Accountability & Finance
Leadership & Adaptability
Culture & Community
Historical Ratings
Historical Ratings
Date PublishedForm 990 FYEOverall ScoreOverall RatingRating Version:
2.111/1/20212020 89.1911/1/20202019 87.118/1/20192018 87.358/1/20182017 79.9510/1/20172016 76.307/1/20162015 76.626/1/20162014 79.55Rating
Version:
2.010/1/20152014 84.0910/1/20142013 87.325/1/20132012 85.009/1/20122011 84.727/1/20122011 86.59
This organization received multiple star ratings within this fiscal year, due to
an update to its Accountability and Transparency data and/or the receipt of an
amended Form 990.
10/1/20112010 84.349/20/20112010 83.72Rating Version:
1.011/24/20102009 83.166/1/20092008 83.933/1/20092007 84.784/1/20082006 84.696/1/20062005 83.497/1/20052004 77.947/1/20042003 82.588/1/20032002 82.534/15/20032001 85.08
RATING REPORT
* Impact & Results
* Accountability & Finance
* Culture & Community
* Leadership & Adaptability
Impact & Results
Impact & ResultsAccountability & FinanceCulture & CommunityLeadership &
Adaptability
ACCOUNTABILITY & FINANCE
The Leukemia & Lymphoma Society has earned a 89% for the Accountability &
Finance beacon. See the metrics below for more information.
This beacon provides an assessment of a charity's financial health (financial
efficiency, sustainability, and trustworthiness) and its commitment to
governance practices and policies.
This Accountability & Finance score represents IRS Form 990 data up until FY
2020, which is the most recent Form 990 currently available to us.
Learn more
Accountability and Transparency
Full Credit
Partial Credit
No Credit
Not Applicable
Governance
Governance
Charity Navigator looks to confirm on the Form 990 that the organization has
these governance practices in place.
Sources Include: IRS Form 990
Independent Voting Board Members ... (More)
The presence of an independent governing body is strongly recommended by many
industry professionals to allow for full deliberation and diversity of thinking
on governance and other organizational matters. Our analysts check the Form 990
to determine if the independent Board members are a voting majority and also at
least five in number. (Less)No Material Diversion of Assets ... (More)
A diversion of assets – any unauthorized conversion or use of the organization's
assets other than for the organization's authorized purposes, including but not
limited to embezzlement or theft – can seriously call into question a charity's
financial integrity. We check the charity's last two Forms 990 to see if the
charity has reported any diversion of assets. If the charity does report a
diversion, then we check to see if it complied with the Form 990 instructions by
describing what happened and its corrective action. This metric will be assigned
to one of the following categories:
* Full Credit: There has been no diversion of assets within the last two years.
* Partial Credit: There has been a diversion of assets within the last two
years and the charity has used Schedule O on the Form 990 to explain: the
nature of the diversion, the amount of money or property involved and the
corrective action taken to address the matter. In this situation, we deduct 7
points from the charity's Accountability and Transparency score.
* No Credit: There has been a diversion of assets within the last two years and
the charity's explanation on Schedule O is either non-existent or not
sufficient. In this case, we deduct 15 points from the charity's
Accountability and Transparency score.
(Less)Audited Financials Prepared by Independent Accountant ... (More)
Audited financial statements provide important information about financial
accountability and accuracy. They should be prepared by an independent
accountant with oversight from an audit committee. (It is not necessary that the
audit committee be a separate committee. Often at smaller charities, it falls
within the responsibilities of the finance committee or the executive
committee.) The committee provides an important oversight layer between the
management of the organization, which is responsible for the financial
information reported, and the independent accountant, who reviews the financials
and issues an opinion based on its findings. We check the charity's Form 990
reporting to see if it meets this criteria.
* Full Credit: The charity's audited financials were prepared by an independent
accountant with an audit oversight committee.
* Partial Credit: The charity's audited financials were prepared by an
independent accountant, but it did not have an audit oversight committee. In
this case, we deduct 7 points from the charity's Accountability and
Transparency score.
* No Credit: The charity did not have its audited financials prepared by an
independent accountant. In this case, we deduct 15 points from the charity's
Accountability and Transparency score.
(Less)Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ...
(More)
Making loans to related parties such as key officers, staff, or Board members,
is not standard practice in the sector as it may divert the charity's funds away
from its charitable mission and can lead to real and perceived
conflict-of-interest problems. This practice is discouraged by sector trade
groups which point to the Sarbanes-Oxley Act when they call for charities to
refrain from making loans to directors and executives. And the IRS is concerned
enough with the practice that it requires charities to disclose on their Form
990 any loans to or from current and former officers, directors, trustees, key
employees, and other "disqualified persons." Furthermore, some state laws go so
far as to prohibit loans to board members and officers. And although employees
and trustees are permitted to make loans to charities, this practice can also
result in real and/or perceived conflict of interest problems for the charity.
Furthermore, it is problematic because it is an indicator that the organization
is not financially secure. (Less)Documents Board Meeting Minutes ... (More)
An official record of the events that take place during a board meeting ensures
that a contemporaneous document exists for future reference. Charities are not
required to make their Board meeting minutes available to the public. As such,
we are not able to review and critique their minutes. For this performance
metric, we are checking to see if the charity reports on its Form 990 that it
does keep those minutes. In the future, we will also track and rate whether or
not a charity keeps minutes for its committee meetings. (Less)Distributes 990
to Board Before Filing ... (More)
Providing copies of the Form to the governing body in advance of filing is
considered a best practice, as it allows for thorough review by the individuals
charged with overseeing the organization. The Form 990 asks the charity to
disclose whether or not it has followed this best practice. If the charity has
not distributed its Form 990 to the board before filing, then we deduct 4 points
from its Accountability and Transparency score. (Less)Does not Compensate Board
Members ... (More)
The IRS requires that any compensation paid to members of the charity's
governing body be listed on the Form 990. Furthermore, all members of the
governing body need to be listed whether or not they are compensated. It is not
unusual for some members of the board to have compensation listed. The executive
director of the organization frequently has a seat on the board, for instance,
and is compensated for being a full time staff member. However, it is rare for a
charity to compensate individuals only for serving on its Board of Directors.
Although this sort of board compensation is not illegal, it is not considered a
best practice. (Less)
Policies
Policies
Charity Navigator looks to confirm on the Form 990, or for some metrics on the
charity's website, that the organization has these policies in place.
Sources Include: IRS Form 990 and organization's website
Conflict of Interest ... (More)
Such a policy protects the organization, and by extension those it serves, when
it is considering entering into a transaction that may benefit the private
interest of an officer or director of the organization. Charities are not
required to share their conflict of interest policies with the public. Although
we can not evaluate the substance of its policy, we can tell you if the charity
has one in place based on the information it reports on its Form 990. If the
charity does not have a Conflict of Interest policy, then we deduct 4 points
from its Accountability and Transparency score. (Less)Whistleblower ... (More)
This policy outlines procedures for handling employee complaints, as well as a
confidential way for employees to report any financial mismanagement. Here we
are reporting on the existence of a policy as reported by the charity on its
Form 990. (Less)Records Retention and Destruction ... (More)
Such a policy establishes guidelines for handling, backing up, archiving and
destruction of documents. These guidelines foster good record keeping procedures
that promotes data integrity. Here we are reporting on the existence of a policy
as reported by the charity on its Form 990. If the charity does not have a
Records Retention and Destruction Policy, then we deduct 4 points from its
Accountability and Transparency score. (Less)CEO Compensation Process ... (More)
This process indicates that the organization has a documented policy that it
follows year after year. The policy should indicate that an objective and
independent review process of the CEO's compensation has been conducted which
includes benchmarking against comparable organizations. We check to be sure that
the charity has reported on its Form 990 its process for determining its CEO
pay. (Less)Donor Privacy ... (More)
Donors can be reluctant to contribute to a charity when their name, address, or
other basic information may become part of donor lists that are exchanged or
sold, resulting in an influx of charitable solicitations from other
organizations. Our analysts check the charity's website to see if the
organization has a donor privacy policy in place and what it does and does not
cover. Privacy policies are assigned to one of the following categories:
* Yes: This charity has a written donor privacy policy published on its
website, which states unambiguously that (1) it will not share or sell a
donor's personal information with anyone else, nor send donor mailings on
behalf of other organizations or (2) it will only share or sell personal
information once the donor has given the charity specific permission to do
so.
* Opt-out: The charity has a written privacy policy published on its website
which enables donors to tell the charity to remove their names and contact
information from lists the charity shares or sells. How a donor can have
themselves removed from a list differs from one charity to the next, but any
and all opt-out policies require donors to take specific action to protect
their privacy.
* No: This charity either does not have a written donor privacy policy in place
to protect their contributors' personal information, or the existing policy
does not meet our criteria.
The privacy policy must be specific to donor information. A general website
policy which references "visitor" or "user" personal information will not
suffice. A policy that refers to donor information collected on the website is
also not sufficient as the policy must be comprehensive and applicable to both
online and offline donors. The existence of a privacy policy of any type does
not prohibit the charity itself from contacting the donor for informational,
educational, or solicitation purposes.
(Less)
Partial
Transparency
Transparency
Charity Navigator looks to confirm on the Form 990, or for some metrics on the
charity's website, that the organization makes this information easily
accessible.
Sources Include: IRS Form 990 and organization's website
CEO Salary Listed on 990 ... (More)
Charities are required to list their CEO's name and compensation on the Form
990. Our analysts check to be sure that the charities complied with the Form 990
instructions and included this information in their filing. (Less)Board of
Directors Listed on Website ... (More)
Our analysts check to see if the charity lists Board members on its website.
Publishing this information enables donors and other stakeholders to ascertain
the make up of the charity's governing body. This enables stakeholders to report
concerns to the Board. Charity Navigator does not cross-check the Board members
listed on the website with that reported on the Form 990, because the latter
often isn't available until more than a year after the charity's fiscal year
ends. In that time, the charity's Board members may have changed, and the
charity typically reflects those more recent changes on the website. (Less)Key
Staff Listed on Website ... (More)
It is important for donors and other stakeholders to know who runs the
organization day-to-day. Charity Navigator does not cross-check the leadership
listed on the website with that reported on the Form 990 because the latter
often isn't available until more than a year after the charity's fiscal year
ends. In that time, the charity's leadership may have changed and the charity
typically reflects those more recent changes on the website. In other words,
since the Form 990 isn't especially timely, it can not be used to verify the
leadership information published on the charity's site. (Less)Audited Financial
Statements Listed on Website ... (More)
We check the charity's website to see if it has published its audited financial
statements for the fiscal year represented by the most recently filed IRS Form
990. It is important for donors to have easy access to this financial report to
help determine if the organization is managing its financial resources well. We
currently rate charities on whether or not they publish their audit on their
website. (Less)Form 990 Available on Website ... (More)
We check the charity's website to see if it has published its most recently
filed IRS Form 990 (a direct link to the charity's 990 on an external site is
sufficient). It is important for donors to have easy access to this financial
report to help determine if the organization is managing its financial resources
well. (Less)
Financial Metrics
Full Credit
Partial Credit
No Credit
Not Applicable
Liabilities to Assets Ratio - 37.00% - 5/10 pts
Liabilities to Assets Ratio - 37.00% - 5/10 pts
The Liabilities to Assets Ratio is determined by Total Liabilities divided by
Total Assets (most recent 990).
Part of our goal in rating the financial performance of charities is to help
donors assess the financial capacity and sustainability of a charity. As do
organizations in other sectors, charities must be mindful of their management of
total liabilites in relation to their total assets. This ratio is an indicator
of an organization’s solvency and or long term sustainability. Dividing a
charity's total liabilities by its total assets yields this percentage.
Source: IRS Form 990
Working Capital Ratio - 0.97 years - 10/10 pts
Working Capital Ratio - 0.97 years - 10/10 pts
Determines how long a charity could sustain its level of spending using its net
available assets, or working capital, as reported on its most recently filed
Form 990. We include in a charity's working capital unrestricted and temporarily
restricted net assets, and exclude permanently restricted net assets. Dividing
these net available assets in the most recent year by a charity's average total
expenses, yields the working capital ratio. We calculate the charity's average
total expenses over its three most recent fiscal years.
Source: IRS Form 990
Fundraising Efficiency - $0.13 - 7.5/10 pts
Fundraising Efficiency - $0.13 - 7.5/10 pts
The amount spent to raise $1 in charitable contributions. To calculate a
charity's fundraising efficiency, we divide its average fundraising expenses by
the average total contributions it receives. We calculate the charity's average
expenses and average contributions over its three most recent fiscal years.
Source: IRS Form 990
Administrative Expense Ratio - 11.00% - 10/10 pts
Administrative Expense Ratio - 11.00% - 10/10 pts
As reported by charities on their IRS Form 990, this measure reflects what
percent of its total budget a charity spends on overhead, administrative staff
and associated costs, and organizational meetings. Dividing a charity's average
administrative expenses by its average total functional expenses yields this
percentage. We calculate the charity's average expenses over its three most
recent fiscal years.
Source: IRS Form 990
Fundraising Expense Ratio - 14.60% - 7.5/10 pts
Fundraising Expense Ratio - 14.60% - 7.5/10 pts
This measure reflects what a charity spends to raise money. Fundraising expenses
can include campaign printing, publicity, mailing, and staffing and costs
incurred in soliciting donations, memberships, and grants. Dividing a charity's
average fundraising expenses by its average total functional expenses yields
this percentage. We calculate the charity's average expenses over its three most
recent fiscal years.
Source: IRS Form 990
Program Expense Ratio - 74.30% - 6.94/10 pts
Program Expense Ratio - 74.30% - 6.94/10 pts
The Program Expense Ratio is determined by Program Expenses divided by Total
Expense (average of most recent three 990s).
This measure reflects the percent of its total expenses a charity spends on the
programs and services it exists to deliver. Dividing a charity's average program
expenses by its average total functional expenses yields this percentage. We
calculate the charity's average expenses over its three most recent fiscal
years.
Source: IRS Form 990
Expenses: Three-Year AverageAdministrativeFundraisingProgram11%14.6%74.4%
ElementPercentageAdministrative11.00%Fundraising14.60%Program74.30%
Program
Program Expense Growth - 7.08% - 8.08/10 pts
Program Expense Growth - 7.08% - 8.08/10 pts
Organizations that demonstrate consistent annual growth in program expenses are
able to outpace inflation and thus sustain their programs year to year. These
organizations also supply givers with greater confidence by maintaining broad
public support for their programs. We compute the average annual growth of
program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a
charity's program expenses in the first year of the interval analyzed, Yn is the
charity's program expenses in the most recent year, and n is the interval of
years passed between Y0 and Yn.
Source: IRS Form 990
UNSCORED INFORMATION
Total Revenue and Expenses - Data Available
Total Revenue and Expenses - Data Available
This chart displays the trend of revenue and expenses over the past several
years for this organization, as reported on their IRS Form 990.
Salary of Key Persons - Data Available
Salary of Key Persons - Data Available
Presented here are this organizations key compensated staff members as
identified by our analysts. This compensation data includes salary, cash bonuses
and expense accounts and is displayed exactly how it is reported to the IRS. The
amounts do not include nontaxable benefits, deferred compensation, or other
amounts not reported on Form W-2. In some cases, these amounts may include
compensation from related organizations. Read the IRS policies for compensation
reporting
Louis J. Degennaro, President, CEO
$782,431 (0.20% of Total Expenses)
--------------------------------------------------------------------------------
Current CEO and Board Chair can be found in the Leadership & Adaptability report
below.
Source: IRS Form 990 (page 7), filing year 2021
IRS Published Data (Business Master File) - Data Available
IRS Published Data (Business Master File) - Data Available
Below are some key data points from the Exempt Organization IRS Business Master
File (BMF) for this organization. Learn more about the BMF on the IRS website
Activities:
Other school related activities (BMF activity code: 059)
Foundation Status:
Organization which receives a substantial part of its support from a
governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code:
15)
Affiliation:
Independent - the organization is an independent organization or an independent
auxiliary (i.e., not affiliated with a National, Regional, or Geographic
grouping of organizations). (BMF affiliation code: 3)
Data Sources (IRS Forms 990) - Data Available
Data Sources (IRS Forms 990) - Data Available
The Form 990 is a document that nonprofit organizations file with the IRS
annually. We leverage finance and accountability data from it to form Encompass
ratings. Click here to search for this organization's Forms 990 on the IRS
website (if any are available). Simply enter the organization's name (The
Leukemia & Lymphoma Society) or EIN (135644916) in the 'Search Term' field.
Pandemic Response - Data Available
Pandemic Response - Data Available
This organization was impacted by COVID-19 in a way that effected their
financial health in 2020. This normally would have reduced their star rating.
Due to the unprecedented nature of the pandemic, we give charities such as this
one the opportunity to share the story of COVID's impact on them, and doing this
pauses our revision of their rating. Charities may submit their own pandemic
responses through their nonprofit portal.
The Leukemia & Lymphoma Society reported being impacted by COVID-19 in the
following ways:
* Grants Sent
How COVID-19 impacted the organization's operations financially:
With all in-person events canceled, the pandemic put a new lens on our
activities, and we evaluated every program to determine where we saw the most
growth, profitability, efficiency, and opportunity. Our teams swiftly
reengineered our campaigns to a virtual environment and achieved even greater
gains than projected, with many campaigns exceeding previous fundraising totals
and setting new records. Likewise, major giving to LLS continued to increase
throughout the pandemic. Less than three weeks after the national emergency was
declared, LLS launched a COVID-19 patient financial aid program. We quickly
raised more than $4.8M from supporters that helped nearly 20,000 blood cancer
patients and their families. Like many of LLS’s peer-to-peer fundraising
campaigns, we overall surpassed major gift giving goals and attained new highs.
Across our diverse fundraising streams, we found our constituents equally
determined to overcome new obstacles posed by COVID-19.
How COVID-19 impacted the organization's delivery of programs:
Like most organizations, LLS shifted to a remote-work model. All in-person
meetings and events were postponed and eventually replaced with virtual events.
From the pandemic's beginning, LLS has been a leader in providing free education
and support services, advocating for vaccination policies that consider and
serve the unique needs of blood cancer patients. LLS has expanded its work and
is conducting our research studies and supporting those of others who provide
important data on the safety and efficacy of COVID-19 vaccines for blood cancer
patients. To sustain our Research portfolio, LLS elected not to fund many new
grant applications in June 2020. We also reduced the funding of certain existing
grants. To compensate, we worked with NIH to create an emergency supplemental
fund for post-doctoral associates. As our financial position improved, we
reopened many of our grant programs and have gradually reinstated funding of
grants that experienced a reduction in funding in June 2020.
How this organization adapted to changing conditions caused by COVID-19:
Our experience conducting business throughout the pandemic has taught us a lot
about the need for resiliency -- while prioritizing the safety of our employees
and constituents -- so that we can continue to deliver on our lifesaving
mission. We enlisted experts in business continuity to help build a program that
prepares employees with guidance to respond to any incident that disrupts normal
business operations. After two years of remote work, and continuous feedback
from employees, we implemented our Flexible Work Arrangement (FWA) which
provides employees the option to work remotely, in-person or hybrid, and creates
the opportunity for flexibility.
Innovations the organization intends to continue permanently after the pandemic:
We evolved the original “Business Continuity Team” (BCT), which was established
at the beginning of the pandemic, into two groups: • The former “BCT” will
transition to the Business Continuity Steering Committee. Their goal is to focus
on the strategic direction and policies of the business continuity program. •
LLS established a Crisis Management Team (CMT), to respond to high-severity
incidents. This group encompasses cross-functional representation from every
area of business. In addition, we implemented new guidance and plans: • A new
Emergency Procedures Guide provides safety best practices for emergencies that
can occur in the office or at home. • Business Continuity Plans have been
established for each area of business at LLS. These plans outline the potential
impact of disruptions to help staff develop and prepare strategies that support
the continuation of business processes during an incident.
IMPACT & RESULTS
The Leukemia & Lymphoma Society has earned a 100% for the Impact & Results
beacon. See the metrics below for more information.
This beacon estimates the actual impact a charity has on the lives of those it
serves, and determines whether it is making good use of donor resources to
achieve that impact.
Learn more
Metrics
Full Credit
Partial Credit
No Credit
Not Applicable
Rated Program
Rated Program
Program
Patient Financial Assistance Programs
Activities
The nonprofit provides financial assistance to patients with medical conditions.
Program Type
Financial Assistance for Patients with Medical Conditions
Beneficiaries Served
Program Geography
Time Period of Data
7/1/20 to 6/30/21
Outcomes and Cost
Outcomes and Cost
Outcomes: Changes in the lives of those served by a nonprofit. They can be
caused by the nonprofit.
Costs: The money spent by a nonprofit and its partners and beneficiaries.
Impact: Outcome caused by a nonprofit relative to its cost.
Cost-effectiveness: A judgment as to whether the cost was a good use of
resources to cause the outcome.
Outcome Metric
Increase in income for a patient with medical conditions
Outcome Data Source
Ratings are based on data the nonprofit itself collects on its work. We use the
most recent year with sufficient data. Typically, this data allows us to
calculate direct changes in participants' lives, such as increased income.
Outcome data collected during the program. The nonprofit submitted data on the
dollar value of all financial assistance provided to patients, which we use to
calculate the additional income received.
Method for Attributing Outcomes
We don't know if the observed changes were caused by the nonprofit's program or
something else happening at the same time (e.g., a participant got a raise). To
determine causation, we take the outcomes we observe and subtract an estimate of
the outcomes that would have happened even without the program (i.e.,
counterfactual outcomes).
We estimate the dollar amount of financial assistance attributable to the
nonprofit by comparing the financial assistance given by the nonprofit to the
financial assistance that would have been provided in the absence of the
nonprofit (the “counterfactual”). In this case, we estimate the counterfactual
to be zero based on two assumptions. First, we assume there is functionally no
upper limit to the amount of cash transfers that continue to be valuable to
patients as they are far from reaching the point of diminishing marginal
returns, such that aid provided by one nonprofit does not displace aid provided
by another. Second, we assume that nonprofits work independently and do not
coordinate the provision of aid to the same patient. As a result, all aid
provided by the nonprofit to patients with medical conditions can be directly
attributable to the nonprofit.
Cost Data Source
After estimating the program's outcomes, we need to determine how much it cost
to achieve those outcomes. All monetary costs are counted, whether they are
borne by a nonprofit service deliverer or by the nonprofit’s public and private
partners.
Program cost data reported by the nonprofit. Partner and beneficiary costs
reported by the nonprofit or estimated by Charity Navigator.
Cost Calculation
$127,000,000 program costs + partner costs + $0 beneficiary costs = $127,000,000
total costs
Impact and Determination
Impact and Determination
We calculate impact, defined as the change in outcomes attributable to a program
divided by the cost to achieve those outcomes.
Impact Calculation
$127,000,000 total costs / $119,000,000 of financial assistance provided =
roughly $3,400 provides $3,200 in financial assistance to a patient.
Benchmark for Rating
Impact & Results scores of financial assistance to patients programs are based
on income generated relative to cost. Programs receive an Impact & Results score
of 100 if they increase income for a recipient by more than $1.50 for every $1
spent and a score of 80 if income increases by more than $0.85 for every $1
spent. If a nonprofit reports impact but doesn't meet the benchmark for
cost-effectiveness, it earns a score of 65.
Determination
Highly cost-effective
UNSCORED INFORMATION
--------------------------------------------------------------------------------
LARGEST PROGRAMS
The Leukemia & Lymphoma Society reported its three largest programs on its FY
2020 Form 990 as:
$198,424,766
Spent in most recent FY
64%
Percent of program expenses
Patient & Community Services
--------------------------------------------------------------------------------
$47,726,107
Spent in most recent FY
15%
Percent of program expenses
Research Programs
--------------------------------------------------------------------------------
$44,287,931
Spent in most recent FY
14%
Percent of program expenses
Public Health Education
--------------------------------------------------------------------------------
CULTURE & COMMUNITY
The Leukemia & Lymphoma Society has earned a 96% for the Culture & Community
beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's culture and
connectedness to the community it serves.
Learn more
Metrics
Full Credit
Partial Credit
No Credit
Not Applicable
Constituent Feedback - Data Available - 100/100 pts
Constituent Feedback - Data Available - 100/100 pts
30% of beacon score
This organization reported that it is collecting feedback from the constituents
and/or communities it serves. Charity Navigator believes nonprofit organizations
that engage in inclusive practices, such as collecting feedback from the people
and communities they serve, may be more effective.
Who are the people you serve with your mission? Describe briefly.
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.
How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by
phone or in person), Paper surveys, Case management notes, Community meetings or
town halls, Constituent (client or resident, etc.) advisory committees,
Suggestion box/email, Other means
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
With whom does your organization share the feedback you got from the people you
serve?
The people we serve, Our staff, Our board, Our funders, Our community partners
How has asking for feedback from the people you serve changed your relationship
with them or shifted power - over decisions, resources, rules or in other ways -
to them?
A recent change we made across our constituent-base was to adjust our follow-up
strategy with patients and caregivers. After receiving feedback from a formal
feedback survey that patients and caregivers wanted the opportunity for more
follow-up conversations with our Information Resource Center (IRC), we adjusted
our workflow to increase the number of follow-up calls our Information
Specialists provided. In addition to periodic larger shifts of this nature, we
are continually conducting strategic research with targeted populations based on
certain demographics like age and cancer diagnosis to ensure we are creating and
providing the most tailored resources and educational materials possible.
What challenges does your organization face in collecting feedback from the
people you serve?
The people we serve tell us they find data collection burdensome
Briefly describe a recent change that your organization made in response to
feedback from the people you serve.
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.
Equity Practices - Data Available - 95/100 pts
Equity Practices - Data Available - 95/100 pts
70% of beacon score
This organization's score of 95 is a passing score. The organization reported
that it is implementing 9 Equity Practices. Charity Navigator believes nonprofit
organizations implementing effective equity policies and practices can enhance a
nonprofit's decision-making, staff motivation, innovation, and effectiveness.
EQUITY PRACTICES (4/7)
We review compensation data across the organization (and by staff levels) to
identify disparities by race.
We ask team members to identify racial disparities in their programs and/or
portfolios.
We analyze disaggregated data and root causes of race disparities that impact
the organization/'s programs, portfolios, and the populations served.
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 disaggregate data by demographics, including race, in every policy and
program measured
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.
EQUITY POLICIES AND PROCEDURES (5/7)
We use a vetting process to identify vendors and partners that share our
commitment to race equity.
We have a promotion process that anticipates and mitigates implicit and explicit
biases about people of color serving in leadership positions.
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.
LEADERSHIP & ADAPTABILITY
The Leukemia & Lymphoma Society has earned a 100% for the Leadership &
Adaptability beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's leadership capacity,
strategic thinking and planning, and ability to innovate or respond to changes
in constituent demand/need or other relevant social and economic conditions to
achieve the organization's mission.
Learn more
Metrics
Full Credit
Partial Credit
No Credit
Not Applicable
Mission - 10/10 pts
Mission - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through
articulating the organization's mission
To cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the
quality of life for patients and their families.
Vision - 10/10 pts
Vision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through
articulating the organization’s vision.
A world without blood cancer.
Source: Nonprofit submitted responses
Goals - 20/20 pts
Goals - 20/20 pts
The nonprofit organization presents evidence of strategic thinking and goal
setting through sharing their most important strategic goals.
Goal One: Push research boundaries to develop new therapies, with a focus on
pediatrics, and expand support services and advocacy to ensure all blood cancer
patients thrive through treatment and survivorship.
Goal Type: Grow, expand, scale or increase access to the existing programs and
services.
Goal Two: Advance health equity. Expand programs & services to underserved
communities. Understand underlying causes of disparities & identify solutions.
Advocate for access to quality, affordable treatment.
Goal Type: Grow, expand, scale or increase access to the existing programs and
services.
Goal Three: Improve clinical trial access. Expand trial locations, collaborating
with major medical centers to bring clinical trials to oncology offices in
surrounding areas (smaller cities, suburbs, towns).
Goal Type: Grow, expand, scale or increase access to the existing programs and
services.
Leadership Development - 15/15 pts
Leadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
DESCRIBE AN INVESTMENT IN LEADERSHIP
We invested significantly in executing our Leadership Transformation program
this past year. Offered to senior leaders and executive directors, this program
was originally offered as a two-day workshop, but we expanded and intensified
the programming, extending it over eight months to culminate in a
two-and-a-half-day capstone simulation. The simulation replicated the
environment of a region in which our fundraising leaders could work in a sandbox
that incorporated all the knowledge and skills they learned throughout their
eight-month journey. Equivalent to a graduate-level program, the curriculum
covered topics like communication and feedback, delegation, and influence
management, all designed to address professional development and later
integrated into the final capstone simulation. Participants could set strategies
and present ideas in a fail-safe environment, while making difficult decisions
and demonstrating self-awareness to manage emotionally challenging situations.
Mobilizing for Mission - 15/15 pts
Mobilizing for Mission - 15/15 pts
The nonprofit provides evidence of leadership through focusing externally and
mobilizing resources for the mission.
THIS ORGANIZATION MOBILIZES FOR MISSION IN THE FOLLOWING WAYS:
* Strategic Partnerships
* Networks of Collective Impact Efforts
* Thought Leadership
* Raising Awareness
* Community Building
* Policy Advocacy
WHAT ARE THIS ORGANIZATION’S EXTERNAL MOBILIZATON EFFORTS?
At LLS, we put patients and mission first. We are more than a “nonprofit” – we
describe ourselves as a social impact organization–ready to truly embrace this
new category for ourselves. We are a connector and convener that brings together
thousands of volunteers and fundraisers that raise dollars for our mission. We
make wise investments, bringing researchers, medical institutions, and partners
together, with proven success in venture philanthropy. We advocate for policies
to protect cancer patients, break barriers to care, and established a reputation
as a credible organization on the Hill. A pioneer in creating innovative
peer-to-peer fundraising campaigns for 30+ years, informing hundreds of
thousands of people per year about our mission through LLS events. Leveraging a
diverse spectrum of engagement channels to communicate, and share information
and resources with innovation at the core - content for earned media i.e.,
op-eds, bylines – utilizing social media to elevate.
Adaptability Story - 30/30 pts
Adaptability Story - 30/30 pts
The nonprofit has an opportunity to tell the story of how the organization
adapted to tremendous external changes in the last year.
The pandemic inspired us to evaluate every program to determine where we saw the
most growth, profitability, efficiency, opportunity, and impact for patients.
Our teams reengineered our campaigns to a virtual environment and achieved
greater gains than projected, with some campaigns setting new records. When we
had to pause the activation of a new program to bring clinical trials to
underserved communities, donors stepped in to bridge the funding gap. We quickly
raised $3.75M needed to launch the program, IMPACT (Influential Medicine
Providing Access to Clinical Trials), and it opened at three major medical
centers in April 2021. Across our diverse fundraising streams that fuel our
mission, we found our constituents equally determined to overcome new obstacles
posed by COVID-19. Despite the inability to convene and provide support in
person, emails, texts, online forums and video meets – became core digital
communication channels for LLS staff, our supporters, and the patients we serve
as we adapted together to continue to drive our mission forward. We continue to
employ the learnings that we had over the last year, including a remote work
environment, and stronger use of technology. We will continue to evolve based on
our mission needs and the greater global landscape. LLS took a leadership role
in investigating the immune response to the initial COVID-19 vaccination and
boosters, motivated by the high death rate due to COVID-19 infections in blood
cancer patients. In December 2020 we convened leaders in hematologic
malignancies in the UK and US to examine the immune responses to the vaccine. In
March 2021, we used the LLS Patient Registry to provide free blood tests to
6000+ patients to blood cancer patients that examine the ability of patients to
make antibodies to the vaccine. Two papers in prestigious journals have been
published by LLS staff. This information is used to advise blood cancer patients
to avoid and or treat COVID-19.
96%
FOUR-STAR CHARITY
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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