Major Accomplishments

Forty years ago, a very small but determined group of volunteers embarked on a journey to create a community where people impacted by a “disease with a funny name” could receive support, education, push for more funding for research to better understand the disease, and be represented within a very long list of social causes facing the American public. What they envisioned at that point and time was undoubtedly daunting and humbling. But their recognition that the needs for people impacted by spondyloarthritis were not being met, coupled with their determination, changed the landscape of the disease in this country, forever.

SAA is proud to introduce a seven-part video series for those newly diagnosed with AS!  One-of-a-kind program created specifically for those with AS, and receive a series of seven short videos, delivered to your inbox over the course of three weeks. These engaging, informative mini-videos have been developed in close partnership with rheumatologists, mental health professionals, other experts in key fields, and people like you, who are living with AS.

Dr. Weiss is an attending physician in the Division of Rheumatology and a Core Faculty Member of the Center for Pediatric Clinical Effectiveness at Children’s Hospital of Philadelphia (CHOP). She is also an Associate Professor of Pediatrics and Epidemiology at the Perelman School of Medicine at the University of Pennsylvania and has a distinguished history of awards, honors, fellowships, and appointments. Her research focus is on the early diagnosis, accurate phenotyping, and targeted treatment of children with spondyloarthritis (SpA).

Early in the spring, SAA creates a dedicated hub on our website with informational and supportive resources on COVID-19, developing numerous articles, interviews, and live-webinars providing our community access to the specific information and resources they urgently need.

SAA, in partnership with members of its Medical and Scientific Advisory Board, launches the only research survey of its kind to study the possible impact spondyloarthritis, and medications used for spondyloarthritis, may have on COVID-19.

SAA presents its first-ever global virtual event featuring six topics with experts to discuss the latest treatment options and research in spondyloarthritis. The Global Spondyloarthritis Summit is attended by participants around the world.

SAA launches a new exercise program with five segments (Cardio, Strength, Yoga, Morning Stretch and Evening Stretch). The updated exercise program features experts instructing spondyloarthritis patients from our community on workouts and routines specifically designed for people living with the disease.

The American College of Rheumatology (ACR), the Spondylitis Association of America (SAA), and the Spondyloarthritis Research and Treatment Network (SPARTAN) partner to create and publish updated recommendations for treating ankylosing spondylitis (AS), and non-radiographic axial spondyloarthritis (nr-axSpA).

New accredited training was finalized in December 2019, offering continuing education credits for EMTs, first responders, and nurses. This program provides the education and training to ensure that all emergency first responders have the opportunity, and incentive, in the form of free CEU hours, to learn the proper and safe techniques for the care and handling of individuals with axial SpA. The program is reaccredited in 2020 and continues to educate first responders.

The Spondylitis Association of America (SAA) is awarded a 4-star rating from Charity Navigator for the fifth consecutive year.

SAA turns 35!

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

Cassie Shafer takes the helm as CEO, bringing a wealth of knowledge and experience from her years in the nonprofit disease organization sector.

SAA co-sponsors the “Spondyloarthritis 2017: Unmet Needs Conference III,” which generates interdisciplinary collaborations between researchers.

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

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.

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.

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 funds research by Medical & Scientific Advisory 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 prepares to seed a national patient registry on ankylosing spondylitis. By combining

three existing patient databases that have been used in research, the composite database looks at thousands and potentially tens of thousands of patients and tracks health trends, disease severity over time, age, gender, race, and many other factors to improve understanding of the disease.

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, published in the summer of 2014.

SAA establishes a CME training program called, “Training Program in MRI for Radiologists in the Early Detection of Spondyloarthritis.” This program educates radiologists to recognize early inflammatory changes in bone marrow and soft tissue at symptom onset, leading to earlier and more accurate diagnoses.

SAA receives its fourth consecutive 4-star Charity Navigator Award.

SAA establishes its annual 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 spondyloarthritis research.

SAA releases the first ever epidemiology study data conducted by the CDC in the U.S., supported by the SAA and by SPARTAN. CDC researchers use the data and statistical methodology from the SAA Screening Tool for Ankylosing Spondylitis as a foundation

for the patient questionnaire that was developed by the CDC for the 2009/2010 study. To date, manuscripts authored by researchers Drs. Reveille and Weisman have been accepted for publication by JAMA and by Arthritis and Research, the ACR peer review journal.

SAA launches the second “AS Life Impact Study” to poll those affected about onset of symptoms, diagnosis, treatments, medications, and quality of life issues.

The TASC genetic study uncovers three variants in the RUNX3, LTBR-TNFRSF1A, and IL12B regions of the genome as well as additional areas that also seem to play a role – PTGER4, TBKBP1, KIF21B, and CARD9. Other genetic suspects include CDKALI, TRADD and STAT3.

The largest U.S. ankylosing spondylitis awareness campaign is launched with Public Service Announcements airing on radio and TV stations throughout the country.

Two more genes implicated in AS, ANTXR2 and IL1R2, are discovered by the TASC genetic study.

SAA moves its headquarters to a Class A industrial park in the San Fernando Valley.

SAA completes development and production of 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 accredited by CECBEMS (Continuing Education Coordinating Board for Emergency Medical Services). The program is adopted by hundreds of Fire Chiefs in the U.S. and by several states, including FL, which has made it part of the mandatory curricula training for first responders.

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.

Laurie Savage becomes Executive Director, having served for 9 years as Director of Programs and 3 years as Associate Director.

TASC Genetic Study identifies two new genes, ERAP1 and IL23R, which play a role in susceptibility to spondylitis. This is the most significant breakthrough in AS research

since HLA-B27 was uncovered 34 years ago and SAA plays a significant role in making the study possible. SAA oversees the nationwide recruitment of patients and families for the study. Together with HLA-B27, these genes account for roughly 70 percent of the overall cause of the disease.

The Genetic Information Non-Discrimination Act (GINA) is signed into law. SAA contributes to the effort to bring about this important legislation through its participation in the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition, which had actively lobbied for the bill’s passage since its inception in 1997.

SAA co-sponsors a second scientific conference with the NIH, titled “Spondyloarthritis: The Unmet Needs.” The purpose of the meeting, organized by Dr. Reveille and Laurie Savage, is to create a cross disciplined dialogue among research clinicians both in AS and peripherally associated AS in “bone” and “gut” experts.

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

Jane Bruckel retires 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 begins supporting a second major research project, “The Development of an Online

Screening Tool to Identify People at Risk for AS,” with Dr. Michael Weisman as Principal Investigator.

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

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 & Related Spondyloarthropathies: Aggressive Management of Aggressive Diseases.”

Jane Bruckel testifies at an FDA hearing to advocate for approval of Enbrel as the first biologic drug for AS.

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 AS community.

The organization helps organize a meeting with the European research group ASAS, U.S. Food and Drug Administration (FDA) researchers, and pharmaceutical companies, to draft an FDA guidance document on AS drug research and development.

SAA and the University of Texas (UT) form the North American Spondylitis Consortium (NASC) – a consortium of 10 university medical centers and SAA. The NIH provides a $6.5 million grant and designates SAA as clinical coordinating center for the AS Family Genetic Project.

SAA co-sponsors a two-day scientific symposium in cooperation with and located on the NIH campus in Bethesda, MD. The purpose of the meeting is to create a cross disciplined dialogue among research clinicians both in AS and peripherally associated fields, such as “bone” and “gut” experts.

SAA provides the seed money for Drs. John Reveille and Li Jin of the University of Texas (UT), Houston to begin the first major, nationwide genetic study of ankylosing spondylitis.

Major league baseball player and AS patient Rico Brogna heads a national promotional campaign to raise awareness of (and funds for) AS research. Over the next five years, the “R.B.I. Challenge” campaign generates $90,000 for research and brings major media coverage in cities across the county.

Jane Bruckel is invited to the White House for a news conference where President Bill Clinton endorses genetic privacy legislation. The invitation is a result of SAA’s advocacy efforts for legislation to protect people against genetic discrimination.

SAA’s Board of Directors changes the organization’s major focus to funding and helping to organize research efforts.

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

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

SAA’s office is destroyed by the Northridge earthquake. The organization continues to provide most services from a temporary location until reestablishing offices in Sherman Oaks (its home until 2009).

The organization changes its name to Spondylitis Association of America (SAA), in order to reflect a broadened mission that encompasses diseases related to ankylosing spondylitis.

ASA co-sponsors a four-day international research and educational symposium with the University of Texas (UT) Dallas, titled “The Second Simmons Center International Conference on HLA-B27 Related Disorders.” This is a first-of-its-kind event in the U.S. One 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.

ASA receives a $50,000 grant from the Harold Simmons Foundation to launch a public awareness campaign. The campaign features TV star Ed Asner in a televised Public Service Announcement airing across the country, and articles appearing in numerous publications including Prevention Magazine and American Fitness Magazine. A permanent 1-800 toll-free line is established to receive the volume of calls from the public response.

ASA establishes a national Medical & Scientific Advisory Board, comprised of distinguished spondylitis researchers and health professionals.

Jane Bruckel becomes the ASA’s first Executive Director.

The group first appears on the public radar when the Los Angeles Times runs an article titled, “The Back Pain with the Funny Name.” The article results in more than 500 letters and phone calls, creating a surge in membership from across the country.

ASA produces the first comprehensive patient self-management book, Straight Talk on Spondylitis, which receives high praise from medical professionals worldwide. More than 3,000 copies are distributed to patients, physicians, and major medical centers. The book is translated into Japanese and distributed throughout Japan. The English version has been completely edited and updated several times since.

The organization becomes a tax-exempt, nonprofit corporation under the name Ankylosing Spondylitis Association (ASA).Volunteer, nurse, and spondyloarthritis patient Jane Bruckel is elected the group’s first president.

The group co-sponsors the first AS symposium in the U.S. More than 100 physicians attend the first day of the program, titled “Back Pain: The Unsuspected Cause.” The second day, over 100 patients attend a program titled “AS: A Cause of Back Pain. What it is, what it is not, and how to cope with it.”

The organization today known 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 specifically written for spondyloarthritis patients.