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Lupus Foundation of America, Inc. Organization Name provided in the GuideStar Exchange* as of 05/04/2012: Lupus Foundation of America, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: LUPUS FOUNDATION OF AMERICA INC

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AKA  LFA
Washington, DC
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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; 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

Lupus Foundation of America, Inc. Organization Name provided in the GuideStar Exchange* as of 05/04/2012: Lupus Foundation of America, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: LUPUS FOUNDATION OF AMERICA 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: LFA
Physical Address: Washington, DC 20036 4952
EIN: 43-1131436
Web URL: www.lupus.org 
Blog URL: lfa-inc.blogspot.com/ 
NTEE Category: G Disease, Disorders, Medical Disciplines
G11 Single Organization Support
H Medical Research
H11 Single Organization Support
Ruling Year: 1978 


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Mission Statement

The Lupus Foundation of America (LFA) is the oldest and largest national nonprofit voluntary health organization focused on improving the quality of life for people with lupus. Our unique dual mission serves the ongoing needs of people affected by lupus today while leading efforts to find a cure – from care to cure!  Through the national office in Washington, DC and a nationwide network of chapters, offices, support groups and community representatives, the LFA conducts programs of research, education, and advocacy.  The LFA is leading efforts to bring national attention and resources to bear upon lupus in order to shine a light on this medically underserved disease, accelerate the pace of medical research on lupus, build support for the needs of those affected by lupus, and elevate lupus to a place of prominence on the nation’s health care agenda.

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 (IRS Form 990, October 2012)

Fiscal Year Starting: October 01, 2012
Fiscal Year Ending: September 30, 2013

Total Revenue $11,066,243
Total Expenses $13,220,488

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

Financial Statements

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Annual Reports

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Leadership

(GuideStar Exchange,
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May 2012)

Ms. Sandra Raymond

Term:

Since Jan 2002

Profile:

Sandra C. Raymond was named LFA President & CEO in January 2002.  She formerly served as the founding CEO of the National Osteoporosis Foundation. As a women's health advocate, Ms. Raymond is bringing national attention and resources to a significant women's health issue that is poorly understood by the public, health professionals and policy makers. She is providing strong leadership for the LFA to address the urgent need to increase the federal and private investment in lupus research, expand public and professional education on lupus, and develop constructive public policies aimed at assisting people with lupus and their families. Ms. Raymond also is interested in galvanizing an international effort on behalf of lupus research and education.

Leadership Statement:

This is an exciting time for people with lupus, their families.  We have seen historic progress in recent years, and helped lay the foundation for a new paradigm in lupus that includes increased awareness and understanding of lupus, greater investment in lupus research, and the development of new, effective, safer, and more tolerable treatments.  Accelerating medical research on lupus and engaging all relative public and private sources of support in this effort are among the LFA’s highest priorities. The LFA is aggressively conducting outreach efforts to increase public understanding of lupus through national awareness campaigns, media outreach, and online and social marketing. We are the leading voice for people with lupus advocating for expanded investment in research and education on Capitol Hill and in state capitols across the country.  Our goal is to ensure that all people affected by lupus have access to the information and services they need.  We thank our supporters, volunteers, and lupus advocates across the nation who band together to help support our efforts on behalf of all those living with lupus.

Board Chair (GuideStar Exchange,
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May 2012)

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Board Co-Chair (GuideStar Exchange,
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May 2012)

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Board of Directors (GuideStar Exchange,
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May 2012)

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Board Leadership Practices (GuideStar Exchange,
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May 2012)
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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 May 2012

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Programs

Program: Bringing Down the Barriers - National Research Program (GuideStar Exchange,
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May 2012)

Budget:
$1,898,659
Category:
Medical Research
Population Served:
General Public/Unspecified

Program Description:

Research - The LFA's National Research Program is dedicated to Bringing Down the Barriers that have obstructed the forward progress of basic biomedical, clinical,  epidemiological, behavioral and translational research on Lupus.

Program Long-Term Success:

Awarded more than $3 million in research grants over the past two years, including initiatives in adult stem cell transplantation as a treatment for severe lupus.

Program Short-Term Success:

Led national efforts to increase appropriations for the National Lupus Patient Registry operated through the Centers for Disease Control and Prevention (CDC) in Fiscal Year 2008 from $1 million to $3.122 million.

Program Success Monitored by:

The LFA evaluates all of its programs through the development and analysis of qualitative and quantitative instruments. For example, the LFA uses focus groups and pre-and post tests to gather baseline and outcome data. The LFA tracks the effectiveness of programs through carefully crafted assessment tools.

Program Success Examples:

Convened the 2nd International Conference on Lupus Flares attended by physicians from around the globe, representatives of every pharmaceutical and biotechnology company developing new treatments for lupus, and representatives of the federal government.

Program: Education and Information (GuideStar Exchange,
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May 2012)

Budget:
$4,771,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Adults

Program Description:

The LFA Education and Information program provides people with lupus and their families support, services and hope by disseminating the latest information about living and coping with lupus.  The aim of this program is to improve the diagnosis and treatment of lupus by translating medical findings into medically sound information and programs for people affected by lupus as well as the physicians and other health professionals who care for people with lupus.   LFA’s public awareness initiatives seek to increase support for lupus by raising awareness and educating the public about the impact of the disease.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit

The Lupus Foundation of America (LFA) is leading efforts to create momentum in the field by establishing new research initiatives and implementing creative solutions to address the tough issues related to advancing the science and medicine of lupus. These initiatives include the Lupus Research Registry provided through the LFA Center for Clinical Trials Education (LFA CCTE) web site, for individuals interested in participating in future lupus clinical trials, and a Web-based service (LFA POINT program) through which physicians and clinical investigators receive uniform training on instruments used to assess disease activity in clinical studies and medical practice. The LFA is also partnering with key stakeholders from industry, government, and the scientific community to evaluate data from previous lupus clinical trials to improve the design of future studies.  We will continue to urge the federal government and industry to increase investment in lupus research, develop a full arsenal of treatments, increase public awareness, and educate our health professionals so lupus may be diagnosed and treated early.
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Reviews

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