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SPONDYLITIS ASSOCIATION OF AMERICA Organization Name provided in the GuideStar Exchange* as of 09/03/2013: SPONDYLITIS ASSOCIATION OF AMERICA

Organization Name as listed in the IRS Business Master File as of 12/08/2014: SPONDYLITIS ASSOCIATION OF AMERICA

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AKA  SAA
Sherman Oaks, CA
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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 and Charting Impact Report are available
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Basic Organization Information

SPONDYLITIS ASSOCIATION OF AMERICA Organization Name provided in the GuideStar Exchange* as of 09/03/2013: SPONDYLITIS ASSOCIATION OF AMERICA

Organization Name as listed in the IRS Business Master File as of 12/08/2014: SPONDYLITIS ASSOCIATION OF AMERICA

* 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: SAA
Physical Address: Sherman Oaks, CA 91413 
EIN: 95-3890767
Web URL: www.spondylitis.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G51 Arthritis
H Medical Research
H90 Medical Specialty Research
E Health—General & Rehabilitative
Ruling Year: 1984 


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Mission Statement

To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.

Legitimacy Information

This organization is registered with the IRS.

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

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses

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September 2013)

Fiscal Year Starting: July 1, 2011
Fiscal Year Ending: June 30, 2012

Total Revenue $1,128,533
Total Expenses $1,237,381

Revenue & Expenses

(GuideStar Exchange,
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September 2013)

Fiscal Year Starting: July 1, 2011
Fiscal Year Ending: June 30, 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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September 2013)

Laurie M. Savage

Term:

Since Dec 2007

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September 2013)

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Board Co-Chair (GuideStar Exchange,
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September 2013)

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Board of Directors (GuideStar Exchange,
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September 2013)

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Board Leadership Practices (GuideStar Exchange,
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September 2013)
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GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

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)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in September 2013

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Programs

Program: Public and Patient Education (GuideStar Exchange,
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September 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

SAA provides public and patient education programs to facilitate early diagnosis, promote effective treatment, and encourage self-help care for optimal quality of life.  SAA’s website, www.spondylitis.org(http://www.spondylitis.org/) , is updated regularly with the latest news and information about spondylitis treatment, medications and research. In addition, information about SAA events and seminars, supportive programs and the online Message Board community can also be found here. SAA hosts free educational seminars in different metropolitan areas throughout the United States each year. All seminars include an experienced rheumatologist who provides an overview of spondyloarthritis along with current medications and other available treatments. Secondary speakers complement the program with presentations on other topics of interest including exercise, physical therapy, occupational therapy, the emotional impact of living with spondylitis, etc. These seminars provide an opportunity for attendees to ask questions and meet other people from the area impacted by spondylitis. SAA offers free online seminar events, referred to as webinars. These webinars allow people to learn about specific spondylitis-related topics in the comfort of their home without having to travel. SAA hosts approximately 3 webinars each year; the live event is free and open to everyone in the spondylitis community.  SAA provides a library of audio interviews (podcasts) to SAA members, which include questions posed to spondylitis experts to provide information on a wide range of topics including spondylitis symptoms, medications, treatment, complications, etc. Members are also asked to submit their own questions to be answered during future podcasts.

Program Long-Term Success:

Spondylitis patients have improved quality of life.

Program Short-Term Success:

Spondylitis patients are knowledgeable about spondylitis symptoms, diagnosis, treatment options and support resources. Spondylitis patients are empowered to seek appropriate treatment.

Program Success Monitored by:

Evaluation of website analytics, feedback forms, program participation and satisfaction surveys.

Program Success Examples:

www.spondylitis.org receives over 1 million hits per month.  Since the redesign and relaunch of the website in July 2009, visitors spend 40% more time on the site reviewing video and audio from the experts as well as articles, diagrams and other information related to spondylitis.

Program: Research (GuideStar Exchange,
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September 2013)

Budget:
--
Category:
Population Served:
General Public/Unspecified

Program Description:

For over 25 years, the Spondylitis Association of America has encouraged and facilitated collaborations among prominent researchers as a means of accelerating advances in spondylitis research, diagnosis and treatment. SAA’s participation in the TASC Genetic Study (Triple A Spondylitis Consortium) genetic study helped researchers identify two genes (ERAP1 and IL23R) that, in addition to HLA-B27, increase the risk of developing spondylitis. Since then, scientists announced the discovery of additional genesthat may provide further pieces of the genetic puzzle that makes up this crippling disease. SAA served as the national subject recruiting center for the TASC Study and provided amajor portion of the subjects for the project -- without whom none of the research would have been possible. While SAA now serves a large community of people living with spondylitis, there are many more who are not yet diagnosed. Our goal is to reach the hundreds of thousands of people who do not yet know the cause of the fatigue and pain they experience and thus are deprived of much-needed treatment. SAA developed a manuscript containing a validated 10-question test designed to help identify some of the symptoms that can be associated with AS and it has been accepted for publication to the peer-reviewed, scientific journal Arthritis Care and Research. SAA’s Screening Tool for Ankylosing Spondylitis provides a basis for primary care physicians to refer patients to rheumatologists to obtain a definitive diagnosis and begin treatment.

Program Long-Term Success:

Researchers uncovered several new genes that contribute to susceptibility for AS. People who exhibit symptoms of spondylitis are referred to a rheumatologist to receive definitive diagnosis within a shorter time frame than the average 5 – 7 years.

Program Short-Term Success:

TASC Genetic study enrolled required number of study participants. SAA’s Screening Tool for Ankylosing Spondylitis has been validated by researchers and accepted for publication to the peer-reviewed scientific journal, Arthritis Care and Research.

Program Success Monitored by:

Number of research participants, number of people utilizing screening tool, number of people with high probability of spondylitis symptoms referred to rheumatologists.

Program Success Examples:

Researchers uncovered several new genes that contribute to susceptibility for AS.

Program: Professional Education (GuideStar Exchange,
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September 2013)

Budget:
--
Category:
Population Served:
General Public/Unspecified

Program Description:

SAA developed the first-ever training program for emergency first responders in collaboration with the National Association of Emergency Medical Technicians (NAEMT). The program, "Ankylosing Spondylitis: Managing Patients in an Emergency Setting, A Primer for First Responders" which includes a video training module, is available to the more than 800,000 emergency medical technicians and paramedics across the United States. This program has also been accredited by CECBEMS (Continuing Education Coordinating Board of Emergency Medical Services) and first-responders can receive one pre-hospital credit. In addition, SAA collaborates with medical institutions to offer physicians’ CME courses. Recent collaborations include partnering with Cedars-Sinai Medical Center to offer physicians the CME course, "Medical and Surgical Approach to Spine Disease and Spine Deformity in Ankylosing Spondylitis" as well as the CME for rheumatologists and other clinicians titled "The Diagnosis and Management of Ankylosing Spondylitis" in partnership with Albert Einstein College of Medicine and Montefiore Medical Center.

Program Long-Term Success:

Medical professionals are aware of the additional complications associated with treating spondylitis patients.  Spondylitis patients receive proper treatment.

Program Short-Term Success:

Medical professionals participate in CE and CME courses.

Program Success Monitored by:

Number of participants, number of participants receiving satisfactory score on continuing education test.

Program Success Examples:

SAA has partnered with the National Safety Council, American Red Cross, American Heart Association, American Safety and Health Institute, National Highway Traffic Safety Administration, Department of Transportation, American College of Osteopathic Emergency Physicians, National Volunteer Fire Council and the Commission on Accreditation of Medical Transport Systems to market this training module to their constituents.

Program: Community Based Patient Programs (GuideStar Exchange,
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September 2013)

Budget:
--
Category:
Population Served:
General Public/Unspecified

Program Description:

SAA sponsors over 35 support groups stretching across the US from Anchorage, AK to Miami, FL. These groups focus on education and support while providing a safe and friendly environment for people to discuss the day-to-day practical challenges of living with spondylitis. SAA recruits and provides guidance to support group leaders through an interview screening process, trainings, and quarterly conference calls. These groups also play an integral role in helping to increase awareness in their communities through their participation in local health fairs and fundraisers. SAA’s peer network program provides an opportunity for one-on-one support within the spondylitis community. People newly diagnosed with spondylitis are matched by Programs staff with peers who have years of experience managing their own spondylitis symptoms. This program helps people newly diagnosed with spondylitis feel less isolated, understand the importance of learning about managing the disease, and feel supported and encouraged to empower themselves for optimum health. Peers regularly communicate by email or telephone, with Programs staff checking-in regularly with each peer match to ensure a successful program.  Spondylitis.org has an online community of message boards that provides an opportunity for spondylitis patients and their loved ones to start and contribute to discussions related to managing spondylitis. In addition, SAA participates on several social networking sites including Facebook, MySpace, YouTube and Twitter. SAA staff provide updates and information through these online communities to promote SAA’s mission.

Program Long-Term Success:

Spondylitis patients are knowledgeable about spondylitis symptoms, diagnosis, treatment options and support resources. Spondylitis patients are empowered to seek appropriate treatment. Spondylitis patients feel supported and less isolated while living with spondylitis.

Program Short-Term Success:

Spondylitis patients feel less isolated and understand that there is a community of spondylitis patients. Spondylitis patients are encouraged to manage their spondylitis appropriately. Spondylitis patients are encouraged to learn about the symptoms, diagnosis, treatment options and support resources.

Program Success Monitored by:

Participation, interaction, customer satisfaction survey.

Program Success Examples:

Participants in the Peer Mentor program rate their overall satisfaction with the program a score of 6 out of possible 7 points.
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