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The Leukemia & Lymphoma Society, Inc. Organization Name provided in the GuideStar Exchange* as of 06/06/2014: The Leukemia & Lymphoma Society, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: LEUKEMIA & LYMPHOMA SOCIETY INC

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AKA  LLS
White Plains, NY
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Evidence of Impact Expert Assessment and Reviews available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

The Leukemia & Lymphoma Society, Inc. Organization Name provided in the GuideStar Exchange* as of 06/06/2014: The Leukemia & Lymphoma Society, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: LEUKEMIA & LYMPHOMA SOCIETY INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: LLS
Physical Address: White Plains, NY 10605 
EIN: 13-5644916
Web URL: www.lls.org 
Video URL(s): For The Leukemia & Lymphoma Society (LLS), now is the most momentous time in cancer research.
NTEE Category: H Medical Research
H30 Cancer Research
Ruling Year: 2001 


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Mission Statement

The Leukemia & Lymphoma Society (LLS) exists to find cures and ensure access to treatments for blood cancer patients. Today, LLS is the world’s largest voluntary health agency dedicated to finding cures for leukemia, lymphoma, myeloma and other blood cancers.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses (GuideStar Exchange,
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June 2014)

Fiscal Year Starting: July 01, 2013
Fiscal Year Ending: June 30, 2014

Total Revenue --
Total Expenses --

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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June 2014)

Mr. Louis J. DeGennaro, Ph.D.

Profile:

Louis J. DeGennaro, Ph.D., was named interim president and CEO of The Leukemia & Lymphoma Society (LLS) in February 2014. DeGennaro has been a critical member of the LLS executive leadership team since he joined LLS in 2005. As a member of the leadership team, DeGennaro helped steward LLS operations. He was named LLS chief mission officer in 2009, with responsibility for leadership of LLS's mission functions of research, patient access, education, public policy and advocacy. He continues to serve as chief mission officer with his role as interim president and CEO. DeGennaro is recognized as a key architect of LLS's cures and access agenda to help save lives of blood cancer patients and the LLS Therapy Acceleration Program® - a venture philanthropy endeavor that demonstrates the role of nonprofit organizations in supporting drug discovery and development with the biotechnology industry. DeGennaro received his Ph.D. in biochemistry from the University of California at San Francisco and did his postdoctoral research at Yale University School of Medicine. His previous academic appointments include research group leader at Max Planck Institute in Munich, Germany, and associate professor of neurology and cell biology at the University of Massachusetts Medical School. DeGennaro has more than 25 years of research and executive management experience. His private-sector positions include senior director of molecular genetics at Wyeth Pharmaceuticals, Princeton, NJ, and executive vice president for research and development, SynX Pharma, Inc., Toronto, Canada.

Board Chair (GuideStar Exchange,
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June 2014)

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Board Leadership Practices (GuideStar Exchange,
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June 2014)
?

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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in June 2014

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Programs

Program: Patient Services and Blood Cancer Research (GuideStar Exchange,
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June 2014)

Budget:
$196,257,539
Category:
Cancer Research
Population Served:
General Public/Unspecified
None
None

Program Description:

Joining hands to help patients cope: improving the quality of life of patients and their families. The Leukemia & Lymphoma Society offers the most comprehensive array of services to patients and families touched by blood cancers. A diagnosis of leukemia, lymphoma or myeloma brings many daily challenges. The Society is committed to providing support and guidance to patients and the health professionals who care for them. Call Center(http://www.leukemia-lymphoma.org/all_page?item_id=4261) - The Information Resource Center (IRC) provides the public, families, health professionals and people living with blood-related cancer accurate, up-to-date, disease-related information and referral services Investing in blood cancer research: LLS has invested more than $680 million in research, approximately $69 million in fiscal year 2009 alone. Programs like the Specialized Center of Research (SCOR), which brings together teams of scientists from different disciplines and our Translational Research Program, which funds research with a high probability of producing innovative patient treatments in an accelerated time frame, have directly contributed to many breakthrough cancer treatments.  Research funded by LLS has led or contributed to advances such as chemotherapy, bone marrow and stem cell transplantation and new, targeted oral therapies such as Gleevec®. Providing critical information and support for patients and their families:  We made 4.9 million contacts with patients, caregivers and healthcare professionals in fiscal year 2009, through our Information Resource Center (IRC), our award winning Web site and community-based patient service programs. We put people together with experts through Web-casts and teleconferences, and provided professional education through seminars, to extend the latest findings to a broader professional audience. Advocating for issues impacting blood cancer patients: With more than 20,000 advocacy volunteers throughout the country, our voice is being heard by those responsible for legislation to fund blood cancer research and educational programs.

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Program: Team In Training (GuideStar Exchange,
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June 2014)

Budget:
--
Category:
Cancer Research
Population Served:
None
None
None

Program Description:

Take part in a marathon or half marathon, a triathlon, a 100-mile century bike ride or a hiking adventure. Walk, run, swim or ride in places like Tahoe, Honolulu, Anchorage, San Diego and Chicago. Hike in Yosemite, Grand Canyon and Rocky Mountain National Parks. Team In Training provides the training to do it all. Certified coaches train you and hold clinics on fitness, nutrition, gear and injury prevention. And your teammates are there for you every step of the way.

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Program: Light The Night Walk (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
June 2014)

Budget:
--
Category:
Cancer Research
Population Served:
None
None
None

Program Description:

The Leukemia & Lymphoma Society's Light The Night Walk funds lifesaving research and support for people battling cancer. Friends, families and co-workers form fundraising teams and millions of consumers help by donating at retail outlets. These efforts culminate in inspirational, memorable evening walks in over two hundred communities each fall across North America.

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Program: Man & Woman of the Year (GuideStar Exchange,
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June 2014)

Budget:
--
Category:
Cancer Research
Population Served:
None
None
None

Program Description:

Enjoy a fun and creative 10-week fundraising competition and earn LLS's Man & Woman of the Year titles by raising funds for blood cancer research. Candidates compete in honor of local children who are blood cancer survivors, the Boy & Girl of the Year.

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Program: School & Youth Programs (GuideStar Exchange,
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June 2014)

Budget:
--
Category:
Cancer Research
Population Served:
None
None
None

Program Description:

Give your students the chance to join in these LLS programs and gain the hands-on experiences that cultivate caring, respect and sharing with others. Each year, 12 million students come together through meaningful service and cooperative teamwork to raise money.

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Program: Leukemia Cup Regatta (GuideStar Exchange,
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June 2014)

Budget:
--
Category:
Cancer Research
Population Served:
None
None
None

Program Description:

Sail to cure cancer! The Leukemia Cup Regatta is a racing and fundraising competition that combines the joy of sailing with the important task of raising money to cure blood cancers and improve the quality of life for patients and their families.

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Program: Make Cures Happen (GuideStar Exchange,
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June 2014)

Budget:
--
Category:
Cancer Research
Population Served:
None
None
None

Program Description:

The Leukemia & Lymphoma Society's (LLS's) Make Cures Happen is a program that gives endurance sports participants the opportunity to add more meaning to their events by raising funds to bring help and hope to patients battling cancer. By participating in Make Cures Happen, you are funding lifesaving cancer research and helping patients live better, longer lives. And as you enjoy the tremendous achievement of completing your athletic event, you can also feel the pride associated with giving back to others.

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Program: Advocacy (GuideStar Exchange,
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June 2014)

Budget:
--
Category:
Advocacy
Population Served:
None
None
None

Program Description:

The LLS Office of Public Policy is charged with pursuing LLS's mission through advocacy aimed at governmental decision-makers. After decisive victories in 2013, LLS will continue to focus on using advocacy to work toward a cure and improve the lives of blood cancer patients in 2014 and beyond.

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Impact Summary from the Nonprofit

As of 2014, LLS has invested nearly $1 billion in research to advance therapies and save lives. From 2000 through 2013, almost 40 percent (31 of 81) of new anti-cancer drugs were FDA-approved for blood cancer patients, more first-ever approvals than for any other group of cancers, and many of these were advanced with funding from LLS. Many of these therapies are also helping patients with other cancers and other serious diseases. LLS is the leading source of free blood cancer information, education and support for patients, survivors, families and healthcare professionals. In North America, LLS’s co-pay assistance program has raised more than $200 million to date to help eligible blood cancer patients afford health-insurance premiums and prescription drug co-pays, assisting more than 36,000 patients since its inception in 2007. LLS also advocates for policies at the federal and state levels to accelerate the approval of new treatments and ensure access to quality, affordable and coordinated care.

Expert Assessment

The Leukemia & Lymphoma Society has improved the state of various blood cancers by increasing funds to conduct research and by providing education and financial services to patients. Read More »

Expert Reviews and Comments

2011 Philanthropedia Top Nonprofit

This organization is a 2011 Philanthropedia top nonprofit, recommended by experts as having high impact.

These expert reviews were generated through Philanthropedia's research methodology to identify high-impact nonprofits. Learn more

Evidence of Impact

The Leukemia & Lymphoma Society has improved the state of various blood cancers by increasing funds to conduct research and by providing education and financial services to patients.

Number of Affiliate Sites
The number of affiliate sites they have across the country, their outreach initiatives with oncology professional organizations as well as outreach initiatives to medically underserved populations underway at a number of their affiliate sites. Researcher and Faculty
Focus on Young Scientists
LLS focuses on young scientists. Researcher and Faculty
Raising Awareness
It is vital to note the importance of researching treatments for Leukemia due to its effect on children. The Leukemia and Lymphoma Society is not only the most well known organization, but it raises the most awareness which is important in finding a way to treat children with this disease. Foundation Professional
Great Resource to Other Organizations
LLS has been consistently well organized and well respected in the different states I work with. They also provide free nursing and social work CEU's for all meetings we coordinate that have at least one speaker on blood cancers or bone marrow transplant. I have been both a volunteer for LLS as well as collaborated with them on state cancer comprehensive cancer control plans/networks, as well as participated with them in coalitions, as well as had their staff as volunteers for me when putting on multi-day, multi-track meetings for regions of the country. Other
LLS has consistently been a collaborator with my organizations across many states. I have been on their advisory board in OK and also use them for CEU credits for nurses and social workers at no cost to us in many states. There has been a great deal in turnover in the OKC office over the past year or so but I think it is for the better. I don't know the details but do know some of the personalities who have been moved along. Other
Funding Research
LLS has broadened its mandate in recent years to include all blood cancers and has communicated and implemented this extension of mission effectively. It has real impact through its research funding process. Nonprofit Senior Staff
They have increased the quantity of clinical trials for pediatric cancers. Other
I know the LLS was the fusion of separate leukemia and lymphoma societies, and they make important funding contributions to research for these diseases. I think of them as similar to the ACS but only focused on "liquid" cancers. Overall good reputation, but my work is more on solid tumors, so I do not know much about operations. Researcher and Faculty
Good Patient Services
They help all blood cancer patients with financial assistance and education. Other
This organization is the result of the successful merger of two organizations a few years ago, a process that was accomplished remarkably well. They now are one of the primary sources of information and assistance for individuals with leukemia or lymphoma and a significant factor in influencing the “research agenda” for blood cancers. Other

Organizational Strengths

This organization's leadership team, its way of dealing with and recruiting volunteers, and its effective marketing strategies are reasons why the group has been so effective, according to experts.

Great Leadership
LLS has a strong leadership that engages in active partnerships with a number of other cancer organizations. Researcher and Faculty
Their leadership is outstanding, and the review process is a model for how to do this sort of thing. Researcher and Faculty
This organization is very strong from both at finances and leadership perspective. Other
Effective Marketing
This organization has very strong marketing skills and successfully helps to raise awareness about Leukemia as well as Lymphoma. The also have a very strong leadership force that helps to keep the organization at the forefront of Leukemia oriented foundations. Foundation Professional
They have strong marketing. Other
Good System of Volunteers
The staff has been excellent at collaboration as well as recruiting and keeping volunteers. The volunteers are appreciated and know that. Other
LLS has great strength in its volunteer scientists and community leaders. It also runs many participatory programs that engage volunteers. Nonprofit Senior Staff
Low Administrative Costs
It gets a maximum amount of money into patients and researchers hands. They have low administrative costs. Other

Areas for Improvement

Experts have noted that the Leukemia & Lymphoma Society could improve by engaging in more collaborations, expanding more into the realm of policy, and hiring more staff.

Stronger Focus on Children
This non-profit could improve by doing some more hands on activities with children who suffer from Leukemia in addition to the national initiatives that exist. Foundation Professional
More Collaborative Efforts
More collaboration with other blood cancer groups at the program level would be beneficial to patients with blood cancers. Nonprofit Senior Staff
Collaborate with ACS. Other
More Staff
They should spend a bit more to help local coordinators. They need more staff help as well. Other
Greater Policy Role
With their depth and strength, this organization should get more actively involved in policy issues that affect blood cancer patients and affect the pace of new drug development and approval. They are not known for being willing to take a position on controversial issues, but they have the credibility to do so. Other
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