Major Accomplishments

The organization known today as the Spondylitis Association of America holds its first meeting in a home in Los Angeles, where 10 patients and two physicians create the country’s first-ever ankylosing spondylitis (AS) support group. The organization produces the first quarterly newsletter (known today as Spondylitis Plus) specifically written for spondylitis patients.

The organization becomes an official tax-exempt, non-profit corporation under the name Ankylosing Spondylitis Association (ASA) with the goal of "overcoming our sense of isolation, to find out what worked best and what didn't work, to cope with frustrating challenges, and to celebrate our shared successes as we learned how to live with this disease."

- Jane Bruckel, Co-Founder

The Los Angeles Times runs an ASA article, "The Back Pain with the Funny Name," prompting over 500 letters and phone calls and a surge in memberships from across the country.

ASA also releases its first comprehensive patient self-management book, "Straight Talk on Spondylitis," which receives high praise from medical professionals worldwide and records over 3,000 copies distributed.

ASA establishes a national Medical & Scientific Advisory Board, comprised of distinguished spondylitis researchers and health professionals. Jane Bruckel becomes ASA's first Executive Director.

The Ankylosing Spondylitis Association (ASA) co-sponsors a four-day international research and educational symposium with the University of Texas at Dallas, titled "The Second Simmons Center International Conference on HLA-B27 Related Disorders." A highlight of the conference is the unveiling of the three-dimensional structure of the HLA-B27 molecule, a major step forward in scientific discovery. ASA organizes a concurrent program of clinical sessions for arthritis health care professionals, such as physical therapists and nurses. The conference culminates with an educational program for patients.

The ASA changes its name to become the Spondylitis Association of America (SAA) to reflect a broadened mission that encompasses diseases related to ankylosing spondylitis.

SAA's Board of Directors change the organization's major focus to funding and helping to organize research efforts into uncovering the causes and the cure.

Jane Bruckel meets with National Institutes of Health Director Stephen Katz to announce SAA's new research commitment and discuss future collaborations.

SAA embarks on fundraising for AS research with a leading gift of $30,000 from The Jean and E. Floyd Kvamme Foundation and Damon Kvamme.

SAA co-sponsors a two-day scientific symposium in cooperation with the NIH. The purpose of the meeting is to encourage a dialogue between research clinicians in spondyloarthritis and those in the bone and gut fields.

SAA provides the seed money for John D. Reveille, MD and Li Jin, MD, both of the University of Houston, to begin the first major, nationwide genetic study of ankylosing spondylitis.

SAA and the University of Texas (UT) form the North American Spondylitis Consortium (NASC), a consortium of 10 university medical centers and SAA. The National Institutes of Health provides a $6.5 million grant and designates SAA as clinical coordinating center for the AS Family Genetic Project, the first time a patient advocacy organization has ever been granted this designation by the NIH.

SAA sponsors and develops the first extensive survey among AS patients nationwide. “The AS Life Impact Survey” results in major findings never before documented that enable physicians and SAA to better address the needs of the spondylitis community.

SAA holds its first educational seminar in Marina del Rey, CA. It is hugely successful with 98 attendees and sets the precedence for all of SAA's future seminars.

SAA helps organize a meeting with European research group Assessment of SpondyloArthritis international Society (ASAS), the FDA, researchers, and pharmaceutical companies to draft an FDA guidance document on AS drug research and development.

SAA holds an organizational meeting for U.S. researchers to establish the Spondyloarthritis Research and Treatment Network (SPARTAN) for the purpose of advancing clinical research of spondyloarthritis in the United States.

SAA offers its first accredited continuing medical education (CME) program for physicians titled, "Ankylosing Spondylitis and Related Spondyloarthropathies: Aggressive Management of Aggressive Diseases."

Jane Bruckel testifies before the Food and Drug Administration (FDA) to advocate for approval of Enbrel as the first biologic drug with an indication for ankylosing spondylitis.

SAA begins a second major research project, "The Development of an Online Screening Tool to Identify People at Risk for AS," with Michael H. Weisman, MD as Principal Investigator. Ultimately, the screening tool will help to identify new cases, greatly improve early diagnosis, encourage care-seeking among patients who learn that they are at risk for AS, provide useful information to patients and physicians, and will help raise awareness about AS and its related diseases.

Jane Bruckel retires from her role as Executive Director after 23 years at the helm of the organization. The position is filled in the interim until Laurie Savage takes the lead position in 2008.

SAA co-sponsors a second scientific conference with the NIH, titled "Spondyloarthritis: The Unmet Needs." The purpose of the meeting, organized by John D. Reveille, MD and Laurie M. Savage, is to bring together experts in several different scientific areas to foster multidisciplinary approaches to the classification, pathogenesis and management of AS and its related diseases.

The NIH awards an additional grant in the amount of $5 million to the genetic project headed by John D. Reveille, MD, with a goal of identifying the exact genes within the seven chromosome regions that cause and influence ankylosing spondylitis.

Laurie M. Savage, MS FLE assumes the role of Executive Director of SAA, having served for nine years as Director of Programs and three as Associate Executive Director.

SAA oversees recruitment of patients and families for the TASC genetic study, which identifies two additional genes—ERAP1 and IL23R—that play a role in susceptibility to spondylitis. This is hailed as the most significant breakthrough in spondylitis research since the association of HLA-B27 with ankylosing spondylitis was discovered in 1972.

SAA contributes to the effort to bring about the Genetic Information Non-Discrimination Act (GINA), which is signed into law.

SAA completes the first-ever training video for emergency first responders, titled "Ankylosing Spondylitis: Managing Patients in an Emergency Setting, A Primer for First Responders." The program is adopted by hundreds of fire chiefs in the U.S. and by several states, which makes it part of the mandatory training curricula for first responders.

April is declared as Spondylitis Awareness month as part of SAA's ongoing efforts to draw national attention to a potentially debilitating disease that is often undiagnosed or misdiagnosed

The validated study manuscript for "The SAA Screening Tool for Ankylosing Spondylitis” is accepted for publication by Arthritis and Research. SAA launches www.BackPainTest.org to disseminate the online screening tool.

SAA launches the second "Ankylosing Spondylitis (AS) Life Impact Study" to poll those affected about onset of symptoms, diagnosis, treatments, medications, and quality of life issues.

The Triple “A” Ankylosing Spondyloarthritis Consortium (TASC) genetic study identifies three variants in the RUNX3, LTBR-TNFRSF1A, and IL12B regions of the human genome that are convincingly associated with ankylosing spondylitis, as well as four additional areas that also seem to play a role–PTGER4, TBKBP1, KIF21B, and CARD9. Other genetic suspects include CDKALI, TRADD, and STAT3.

SAA establishes its annual Young Investigator Award (later renamed the SAA/Bruckel Early Career Investigator Award) which recognizes outstanding "contributions to the care and understanding of patients with spondyloarthritis." The award winner gets a $10,000 grant from SAA for use in research in the field of spondylitis.

The first ever U.S. epidemiology study data, compiled by the Centers for Disease Control and Prevention (CDC) and supported by SAA and SPARTAN, is released. CDC researchers use this data and statistical methodology from SAA’s Screening Tool for Ankylosing Spondylitis as a foundation for the patient questionnaire they developed for the 2009/2010 National Health and Nutrition Examination Survey (NHANES).

SAA is again awarded a 4-star rating from Charity Navigator for excellence in fiscal responsibility and transparency.

The American College of Rheumatology (ACR), the Spondyloarthritis Research and Treatment Network (SPARTAN) and the Spondylitis Association of America (SAA) partner to develop new ankylosing spondylitis and axial spondyloarthritis treatment guidelines, anticipated to be published in the summer of 2014.

SAA is currently in the early stages of developing a CME training program for radiologists. Titled the “Training Program in MRI for Radiologists in the Early Detection of Spondyloarthritis,” this program will educate radiologists to recognize early inflammatory changes in bone marrow and soft tissue at symptom onset, leading to earlier and more accurate diagnoses.

The culmination of years of work by the Spondylitis Association of America (SAA), the American College of Rheumatology (ACR), and Spondyloarthritis Research and Treatment Network (SPARTAN), “The Axial SpA Treatment Guidelines” are presented at the American College of Rheumatology Scientific Meeting. These guidelines bring together cohesive treatment recommendations to be considered by U.S. rheumatologists in treating people diagnosed with the disease.

SAA holds a state-of-the-art certified continuing medical education (CME) program called "Magnetic Imaging Workshop in Spondyloarthritis (SpA)." The purpose of this CME program was to teach radiologists and rheumatologists to recognize early inflammatory changes in bone marrow and soft tissue at symptom onset, leading to earlier and more accurate diagnoses.

SAA funds research by Medical Board member Joel Taurog, MD into the molecular basis for the association of ankylosing spondylitis with HLA-B27.

SAA is again awarded a 4-star rating from Charity Navigator for excellence in fiscal responsibility and transparency.

SAA funds research by Medical Board member James T. Rosenbaum, MD to test his hypothesis that HLA-B27 shapes the gut microbiome. Alteration of the microbiome could potentially be used to treat or prevent many diseases caused by the immune system, including ankylosing spondylitis.

Phase I of the Spondylitis Association of America’s patient registry, which includes 10 years of data for analysis, is completed. Combining three existing patient databases used in research, the composite database will be used to look at potentially tens of thousands of patients to track health trends, disease severity over time, age, sex, race, and many other factors to improve understanding of the disease.

The Spondylitis Association of America (SAA) is again awarded a 4-star rating from Charity Navigator for excellence in fiscal responsibility and transparency.

Cassie Shafer joins SAA as the new CEO. With substantial administrative experience from various non-profit organizations, Cassie's transition into SAA is extremely smooth and her knowledge in the field of non-profits will help SAA better serve its spondylitis community.

SAA co-sponsors the "Spondyloarthritis 2017: Unmet Needs Conference III," which is expected to generate interdisciplinary collaborations between researchers in other disciplines and open new areas of investigation using cutting edge technologies to expand the breadth and depth of spondylitis research.

SAA begins collaboration with Novartis to produce a series of AS awareness videos featuring Imagine Dragons lead singer, Dan Reynolds.

SAA turns 35! There are big changes coming in celebration of our 35 years!

After adding over 12 new nation-wide support groups in 2017 and early 2018, SAA hosts a support group leader training in Denver, CO to bring together our leaders from over 20 different states.