The weekend of May 5th - 6th was nonstop activity. There was the Spondylitis Educational Seminar on the 5th, followed by a dinner for Spondylitis Educational Support Group leaders who were flying in from all over the country, and then a special Support Group Leader Training program on the 6th.

At the seminar, I first spoke with one of the early birds to arrive, John Kornfield from Phoenix, AZ, one of the seventeen support group leaders who would be attending the weekend's activities. I asked him what he thought about the progress the support groups have made recently as well as the training session that would be held on Sunday.

Smiling, he said, "We've never had an official training session per say. This is a first."

What about the new resources available to support group leaders?

"There are things that we have today that five years ago we didn't have." And I was amazed to learn that he has been a support group leader for 20 years.

Better lines of communication, the support group leader toolkit, the training session; it was great to hear first hand that a support group leader himself felt, well, supported.

Support Group Leader Richard Powell With Research Coordinator Monica Choi

Just outside the San Diego Room where the meeting was being held, Monica Choi had set up her table dedicated to spondylitis research efforts. Monica is a research coordinator who is working with Dr. Michael Weissman, one of the seminar's speakers, in developing a screening tool to help in the early identification of ankylosing spondylitis symptoms - a project that SAA is also deeply involved in.

I asked Monica what would a participant need to do in order to participate. Turns out, it was just a survey, no blood work, no medical exam, just answering a few questions.

"It's a very simple survey and should only take 15-20 minutes."

Research is a key component of our mission here at SAA, and we were happy that Monica was at the seminar. If anyone is interested in participating in the study, click here (opens a new window).

Just before the seminar got underway, I spoke with SAA Members Nancy & Bill Johnson. This was their second SAA educational seminar. When asked about what they were hoping to get out of the seminar, the answer was obvious, "More information." They were hoping to get an outlook of what things might be like "down the road", especially in terms of new treatments and prognosis.

Bill & Nancy Johnson

After talking to a few more attendees and support group leaders, the seminar got underway. Michael Weisman, MD, Director, Division of Rheumatology, Cedars-Sinai Medical Center, was the first presenter of the day, and he went into depth about the hardships of diagnosing AS, the genetics involved, treatment options and more. When asked what his favorite part of the seminar, Bill Johnson replied, "Dr. Weissman and the research they are doing. I'm interested in the progress [being made]."

(Editor's Note: The seminar was audio taped in its entirety and the presentations will soon be available on this website. A write-up will also appear in an upcoming issue of our magazine, Spondylitis Plus.)

The next presenter was Khawar Siddique, MD, Associate Director, Neurological Spine Surgery from the Cedars-Sinai Institute for Spinal Disorders, and he gave an in depth overview of the surgical management of ankylosing spondylitis. A number of the participants informed me that learning about the surgical option was enlightening, since they had not heard of it previously.

Deborah R. Garnett, Ph.D.

After lunch, Deborah R. Garnett, Ph.D., gave a presentation on coping with the emotional impact of a chronic illness. Scott May, a support group leader who came out from Grand Rapids, MI, enjoyed Deborah R. Garnett's presentation regarding coping the most, and added that the whole seminar, "was great. I'll try to attend as many as I can."

Question and answer periods followed each presentation and questions on topics from exercise to the TNF-a inhibitors were answered by the experts.

I caught up with more of the attendees as we concluded, to see what their favorite part of the seminar was or if they had anything to add.

Alex Best, a support group leader from Myrtle Beach, SC, enjoyed the question and answer sessions the most. "Q&A is very important. It is important to hear how much people are listening…and absorbing." He also expressed his hopes that we could hold the seminars more often.

I made sure to catch up with Monica Choi to see how the research recruitment went. She seemed to think very well. People were "very enthusiastic" about participating and that they, "signed up 28 people." That may not sound like many in the context of this article, but that was nearly a third of the attendees.

Lastly, Bernadette Kim, who was diagnosed with AS just three weeks before the seminar said that her favorite part was, "Meeting other patients and talking to them about [their] experiences…Just talking to other people helped."

It was the first time she had met others with spondylitis.

-Chris Miller, Design & Web Coordinator, SAA

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