Spondylitis Association of America
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SAA is the only non-profit organization whose primary focus is on advocating on behalf of the spondylitis community to increase public awareness and education, increase research funding and improve access to quality health care for all spondylitis patients.

Below are some of our advocacy accomplishments.

2012 - SAA, with a 4-star Charity Navigator rating, is ranked as a top ten charity in all of the United States in a story posted on MSN.com.

A new rate of prevalence of axial spondyloarthritis (SpA) is published in the journal, "Arthritis Care & Research". The data comes directly from the Center of Disease Control's National Health and Nutrition Examination Survey (NHANES) program, which was partially funded by the Spondylitis Association of America (SAA) and the Spondyloarthritis Research and Treatment Network (SPARTAN). The study finds that the rate of SpA is much higher than originally thought.

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.

SAA establishes its annual Young Investigator Award in SpA with a $10,000 prize.

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.

SAA establishes an award called the SAA-Jane Bruckel Young Investigator Award that is given annually to a young researcher who presents the best abstract on spondyloarthropathy at the annual meeting of the American College of Rheumatology (ACR). At the 2011 ACR meeting, the $10,000 award to support spondylitis research went to Judith Smith, MD, PhD, who presented the winning abstract at the 2010 meeting.

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 with a 24 hour turnaround down time of all systems and services.

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 - In January, Laurie Savage replaces Katherine Culpepper as Executive 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.

Savage is invited to serve on the NIAMS Coalition Steering Committee at the NIH.

Savage is invited to serve on the Advisory Board of the Childhood Arthritis Research Consortium, Stanford University, CA.

2007 - 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.

SAA Katherine Culpepper replaces the retiring Jane Bruckel as Executive Director.

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.

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.

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.

2005 - The professional journal Arthritis Care and Research published findings from SAA's AS Life Impact Study. The article states: "Juvenile-onset ankylosing spondylitis is associated with worse functional outcomes than adult-onset AS". The article also highlighted the need for increased awareness and earlier treatment of the disease.

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."

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 of 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 - SAA launches its first research campaign to raise money for the first major, nationwide genetic study of ankylosing spondylitis.

Major league baseball player Rico Brogna, heads a promotional campaign to raise awareness of (and funds for) AS research. The "R.B.I. Challenge" campaign generated $35,000 for research.

The SAA has major coverage in the Metro section of LA Times regarding Rico's experience of his AS.

AMC Theatres in Philadelphia produce and show an awareness slide regarding Rico for awareness in twenty big screen stadium seating theatres for a two day weekend during Philly home games.

1996 - Jane Melnick is replaced by Laurie Savage as Director of Program Services responsible for the development and delivery of program services including Spondylitis Plus, educational materials for physicians and patients, CMEs, fundraising, nationwide patient educational symposia, support groups, answering patient questions via the 800 toll free line/email @ spondy@aol.org and the development of the SAA first web presence.

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.

The Jean and E. Floyd Kvamme Foundation and Damon Kvamme provide $30,000 to seed a fund-raising campaign for AS research.

1993 - SAA moves into its own office, in Southern California's San Fernando Valley.

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 the four-day "Second Simmons Center International Conference on HLA-B27-related Disorders."

1990 - The organization co-sponsors an international research symposium, with the University of Texas at Dallas, where the world's leading scientists share their findings.

1989 - ASA receives a $50,000 grant from the Harold Simmons Foundation to launch a public awareness campaign. The grant pays for TV star Ed Asner to represent the SAA as its spokesperson in a taped PSA recording.

1987 - ASA establishes a national Medical & Scientific Advisory Board, comprised of 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. for patients and health professionals titled "AS: A Cause of Back Pain".

1983 - The organization today known as the Spondylitis Association of America holds its first meeting at Jane Bruckel's Los Angeles home, 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.

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