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Alliance for Lupus Research, Inc.

AKA  ALR
New York, 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; Financial Data Annual Revenue and Expense data reported
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Alliance for Lupus Research, Inc.
Also Known As: ALR
Physical Address: New York, NY 10036 
EIN: 58-2492929
Web URL: www.lupusresearch.org 
NTEE Category: H Medical Research
H12 Fund Raising and/or Fund Distribution
H Medical Research
H01 Alliance/Advocacy Organizations
H Medical Research
H80 Specifically Named Diseases Research
Ruling Year: 2000 
How This Organization Is Funded: Public support - $8,871,788
Quasi Endowment Investment Income - $4,755,216


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Mission Statement

The mission of the Alliance for Lupus Research is to prevent, treat and cure Systemic Lupus Erythematosus through bio-medical research.

Legitimacy Information

This organization is registered with the IRS.

This organization is not required to file an annual return with the IRS.

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Annual Revenue & Expenses (GuideStar Exchange,
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June 2014)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

Total Revenue $13,676,996
Total Expenses $12,865,373

Revenue & Expenses (GuideStar Exchange,
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June 2014)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

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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. Kenneth M. Farber

Board Chair (GuideStar Exchange,
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June 2014)

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Board of Directors (GuideStar Exchange,
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June 2014)

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Board Leadership Practices (GuideStar Exchange,
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June 2014)
?

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?
YES
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?
YES
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?
YES
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?
YES
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?
YES

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: Lupus Research Grants (GuideStar Exchange,
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June 2014)

Budget:
$7,000,000
Category:
Medical Research
Population Served:
Females, all ages or age unspecified
Ethnic/Racial Minorities -- General
General Public/Unspecified

Program Description:

The mission of the Alliance for Lupus Research (ALR) is to find better treatments and ultimately prevent and cure Systemic Lupus Erythematosus (SLE or lupus), a debilitating autoimmune disease, through medical research. To accomplish this mission, the ALR engages in active grant making management, working hand-in-hand with investigators to guide and drive the research process.  ALR’s unique funding model supports promising research efforts with the goal of improving the lives of people with lupus in the near future. Through a competitive peer-review process and an innovative venture-capitalist approach, projects by the ALR aim to translate results from the research bench to the bedside. Because the ALR’s board of directors pays for administrative and fundraising expenses, 100% of all other contributions goes to support lupus research programs like SLEGEN.

Program Long-Term Success:

Since its inception, the ALR has committed over $55 million to fund lupus research projects.   We want to find a cure for lupus but in the meantime the long-term success will be for new treatments to come about for lupus patients.

Program Short-Term Success:

The ALR's approach to lupus research has made great progress toward understanding lupus, and we are closer than ever to finding new treatments.  Several promising potential drugs are now in clinical trials - a number of which have resulted directly from ALR funding.

Program Success Monitored by:

Scientific Advisory Board

Program Success Examples:

In 2005, the ALR launched a global consortium of lupus researchers. Members of the International SLE Genetics (SLEGEN) Consortium pooled their resources and intellects, determined to find the genes responsible for lupus. Researchers uncovered robust evidence linking 13 genetic candidates to lupus. The three-year project was supported by $2.5 million in funding from the ALR.
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Impact Summary from the Nonprofit

We believe the solution to lupus is a significant increase in biomedical research focused on new treatments, prevention, and a cure. ALR uses a multi-level review system to ensure that it supports only the finest and most relevant lupus research projects. Applications for funding are rigorously scrutinized through a system called peer-review, in which an individually tailored panel of scientific experts reviews and ranks each research proposal. Then the ALR’s Scientific Advisory Board provides a second level of scrutiny before making funding recommendations to ALR’s Board of Directors, whose members function as final, non-scientist reviewers. Since its founding, ALR has given more money to lupus research than any non-governmental agency in the world; to date over $81 million has been committed. Because our Board of Directors funds all administrative and fundraising expenses, one hundred percent of all donations from the public, and the proceeds of our signature grassroots fundraising program, Walk with Us to Cure Lupus, go directly to support research programs. Great progress is being made as a result of this unprecedented focus on biomedical research. ALR-funded scientists are identifying genes that may predispose individuals to lupus. They are unraveling the ways that the immune system causes the tissue and organ damage so characteristic of the disease. New medications are being designed and tested so that the disease and its complications can be treated more safely and effectively, and perhaps even prevented. New approaches to diagnose and monitor the disease are also being developed.
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Reviews

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