Spondylitis Association of America
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When SAA was founded in 1983, there was no support network, no resource for educational materials, not even a single pamphlet for people with spondylitis. Today, SAA produces the best informational materials on worldwide developments in spondylitis treatment and research. SAA's network of supportive programs ensure that those affected by spondylitis do not have to face this disease alone. Regardless of location, individuals and their families can find the tools they need and connect with someone who listens and understands.

Here are just a few of SAA's Major Accomplishments...

2013 - 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 can look at thousands and potentially tens of thousands of patients and be able to track 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, anticipated to be published in the summer of 2014.

SAA sponsors the world's first cross-platform application / website that will allow people with spondylitis to track, via graphic overlay, their symptoms, their medications, their medical team and appointment schedule and receive information on spondylitis through the application and SAA website. All of this will be accessible through a smart phone (iPhone or Android) or home computer.

SAA is in the early stages of a program to establish a CME training program called 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.

2012 - SAA receives its fourth consecutive year Four Star Charity Navigator Award.

SAA establishes its annual Young Investigator Award in 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.

The release of the first ever epidemiology study data conducted by the CDC in the US, and supported by the SAA and by SPARTAN. The CDC researchers used 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 the CDC researchers, Drs Reveille and Weisman have been accepted for publication by JAMA and by Arthritis and Research, the ACR peer review journal. Additional manuscripts are forthcoming.

2011 - 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.

2010 - The largest U.S. ankylosing spondylitis awareness campaign is launched with Public Service Announcements airing on radio and TV stations throughout the country announce the launch of the www.backpaintest.org

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.

2009 - 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); First Responders can receive continuing education credit for this training. The program has been adopted by hundreds of Fire Chiefs in the US and by several states, including FL, which has made it part of the mandatory curricula training for first responder.

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.

2008 - 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, that 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 played a significant role in making the study possible. SAA oversaw 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.

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.

2006 - SAA co-sponsored a second scientific conference with the NIH, entitled "Spondyloarthritis: The Unmet Needs". The purpose of the meeting, organized by Dr. Reveille and Laurie Savage was 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.

2005 - 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.

2003 - SAA holds an organizational meeting for US 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 entitled, "Ankylosing Spondylitis & Related Spondyloarthropathies: Aggressive Management of Aggressive Diseases."

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

2002 - 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 helped organize a meeting with the European research group called ASAS, the Food and Drug Administration (FDA) researchers and pharmaceutical companies, to draft an FDA guidance document on AS drug research and development.

1999 - 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 provide a $6.5 million grant and designate SAA as clinical coordinating center for the AS Family Genetic Project.

1998 - SAA co-sponsors a two-day scientific symposium in cooperation with and located on the NIH campus in Bethesda. The purpose of the meeting is to create a cross disciplined dialogue among research clinicians both in AS and peripherally associated as in "bone" and "gut" experts.

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

1997 - 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 $235,000 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 Clinton endorses genetic privacy legislation. The invitation is a result of SAA's advocacy efforts for legislation to protect people against genetic discrimination.

1995 - SAA's Board of Directors change the organization's major focus to funding and helping to organize research efforts.

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 the leading gift of $30,000 from The Jean and E. Floyd Kvamme Foundation and Damon Kvamme.

1994 - 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 where it remains until 2009.

1992 - The organization changes its name to Spondylitis Association of America (SAA), in order to reflect a broadened mission that encompassed diseases related to ankylosing spondylitis.

1991 - 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." This was a first-of-its-kind in the US. 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.

1989 - 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 800 toll-free line is established to receive the volume of calls from the public response.

1987 - 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.

1985 - 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 was updated in 1992 and completely edited and brought current in 2009.

1984 - The organization becomes a tax-exempt, non-profit corporation under the name Ankylosing Spondylitis Association. (ASA). Volunteer, nurse and spondylitis patient Jane Bruckel was 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."

1983 - The organization today known as the Spondylitis Association of America holds its first meeting [at Jane Bruckel's Los Angeles home] in a home in Los Angeles, where ten 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 spondylitis patients.

For over 25 years, the Spondylitis Association of America has spoken out on behalf of all who suffer from spondylitis. By making a donation to SAA, you will directly contribute to much-needed public awareness efforts, educational outreach programs, research initiatives, treatment advances and the ongoing search for the cure. Add your voice to our mission to be a leader in the quest to cure ankylosing spondylitis and related diseases and to empower those affected to live life to the fullest. Together, our voice is louder. Together, we make a difference.

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