1. Spondylitis Association of America 20 Years of Setting the Course

2. A History of Firsts First US symposium for AS patients (1984)First US symposium for AS patients (1984) First US symposium for health professionals (1984)First US symposium for health professionals (1984) First comprehensive book for patients, Straight Talk on Spondylitis (1985)First comprehensive book for patients, Straight Talk on Spondylitis (1985) First pamphlet on Juvenile AS (1989)First pamphlet on Juvenile AS (1989) First Spanish language pamphlets for AS in U.S. (1992)First Spanish language pamphlets for AS in U.S. (1992)

4. PsA Patient Survey 60% diagnosed within the last 10 years.60% diagnosed within the last 10 years. 90% reported that the arthritis has been more difficult than the psoriasis90% reported that the arthritis has been more difficult than the psoriasis Biggest challenges: chronic fatique, physical limitations, chronic painBiggest challenges: chronic fatique, physical limitations, chronic pain Most important issues: educating doctors to make early diagnosis, treatmentsMost important issues: educating doctors to make early diagnosis, treatments

5. CollaborationsCollaborations Co-founded the AS International Federation (ASIF) (1988)Co-founded the AS International Federation (ASIF) (1988) - helped 24 countries establish AS organization Co-sponsored a 4-day international research symposium with UT Texas/Dallas (1990)Co-sponsored a 4-day international research symposium with UT Texas/Dallas (1990) Co-sponsored a 2-day conference with NIHCo-sponsored a 2-day conference with NIH - 70 scientists from diverse fields (1998) - 70 scientists from diverse fields (1998)

6. AS Family Genetic Project ( NIH - UT Houston) Vision: to accelerate researchVision: to accelerate research First project - AS Family Genetic ProjectFirst project - AS Family Genetic Project Raised $150,000 start-up fundsRaised $150,000 start-up funds Partnered with Dr. Reveille, UT HoustonPartnered with Dr. Reveille, UT Houston Formed NASC - a consortium of 10 university medical centers and SAAFormed NASC - a consortium of 10 university medical centers and SAA NIAMS funding - $5.5 million grantNIAMS funding - $5.5 million grant SAA’s Role: 1) recruitment & screening site, 2) designated as clinical coordinating centerSAA’s Role: 1) recruitment & screening site, 2) designated as clinical coordinating center

7. “Never before has NIAMS funded an on-going study with a patient-advocacy organization acting as the coordinating center. It’s SAA’s ability to reach families which is critical for the success of this exciting project.” Susana Sztein, M.D. Chief of Rheumatic Diseases Branch NIAMS

8. AS Life Impact Study (Industry) A survey of AS patients’ experiences and needsA survey of AS patients’ experiences and needs Conducted by Harris Interactive (the Harris Poll)Conducted by Harris Interactive (the Harris Poll) Accepted for podium and poster presentations at ACR 2003Accepted for podium and poster presentations at ACR 2003 Being prepared for publicationBeing prepared for publication

9. AS Guidance Document for Industry (ASAS) AS Guidance Document for Industry (ASAS) Facilitated the development of an AS Guidance Document for submission to the FDA in June 2003. SAA’s Role: 1) Participation in the selection of the steering committee 2) Project coordinator for meeting in D.C. 3) Obtaining sponsors 4) PR Role

10. SpA-US Working Group (to be named) SAA’s role:SAA’s role: 1) Represented on the steering committee 2) Project coordinator for the organizational meeting held in August, 2003 August, 2003 3) Obtaining sponsors

11. Lessons Learned Stay focused on our common goals 1. Together, clarify goals 2. Together, develop a written plan, timetable and milestones 3. Delineate responsibilities and policies (Define what each partner will and will not do.) 4. Communicate, communicate, communicate