Research explained.  Friendships forged.
September 23-25, 2010
Hilton St. Louis at the Ballpark
St. Louis, MO

TMA members streamed into St. Louis Thursday, Sept. 23, for the start of the Annual Patient Conference. Those who stayed at the Ballpark Hilton enjoyed a view of the waterfront’s magnificent arch as well as Busch stadium.

As they registered, they recognized old friends and made new ones, filling the second floor with talk and laughter.

Many members and their families were there for the first time, so TMA Executive Director Bob Goldberg provided some guidance for making the most of the Conference. He said the lessons they learned from each other would be as important as those learned from the three days of sessions presented by health professionals.

In mid-afternoon, everyone attended get-acquainted sessions appropriate to disease type, then came together for some words of inspiration and encouragement from Illinois state champions wrestling coach Mike Powell, a PM patient who was forced to re-examine his life when he was struck with two especially tough bouts of illness a few months apart. Powell spoke honestly about his ups and downs, and shared his plan for an uncertain future with those assembled. “I’m still a coach, a teacher, a son, a husband, a man,” Powell said. “I made a list of what I wanted for the future, then revised it to reflect what was actually possible.”

People moved on to the afternoon sessions:

Aquatherapy in the hotel pool by “Show Me” Aquatics

Myositis and Lung Disease by Dr. Robert Wortmann

Muscle Biopsy: Clues to Outcome and Treatment by Dr. Alan Pestronk

Friday, September 24

The day began with a popular “earlybird” session, “Meditation for Stress Relief” with Dr. Michael Max of the YongKang Clinic.

At breakfast, there were announcements and a demonstration by Janice Brennan of Support Dogs Inc. and Obi, her canine co-worker. The benefits of service dogs for people with muscle disease will be discussed in the Fall, 2010 issue of the OutLook, TMA’s quarterly newsletter.

Everyone moved to breakout sessions, according to their interests:

• Myositis for beginners– Dr. Robert Wortmann

• Fall Prevention and Recovery – Washington University Neuromuscular Rehab Staff

• Remaining Close to your Partner – Andrew White

• Nutrition for Inflammatory disease – Rosemary Istre

• Introduction to Chinese Medicine – Dr. Michael Max

Several sessions repeated in the late morning, and two new sessions were offered:

• Practical Solutions: Ideas for comfort and independence – Washington University Neuromuscular Rehab Staff

• Acupuncture for Balance – Dr. Michael Max

At lunch, everyone met TMA’s board of directors. Board Chairman Jan Schuler told the audience that she’d attended every Annual Conference from the start of TMA, and benefited enormously from the friendships and support. Attendees moved on to afternoon classes, repeats of the morning sessions plus Emotional Aspects of Chronic Disease presented by Andrew White.

Following the afternoon sessions, KIT leaders and others interested in starting a group joined TMA staff to discuss improving local support.

Saturday, Sept. 25

The day began with an early-bird session of seated yoga, presented by Lissa Stallings Boone.

After breakfast, everyone went to sessions addressing treatment for their specific diseases.

• Treating IBM – Dr. Anthony Amato

• Treating PM – Dr. Lisa Christopher-Stine

• Treating DM – Dr. David Fiorentino

• Informal Caregivers Forum – Carla Stevenson

Following the morning sessions, 18 members of TMA’s Medical Advisory Board addressed the Conference attendees, introducing themselves and describing their current research and interests. Watch for a summary of this session in the Fall edition of TMA’s OutLook.

Andrew White presented Caregivers Cope with Stress and TMA’s medical advisors led other afternoon sessions:

• Myositis and Cancer – Dr. Robert Cooper

• New Thinking in IBM, PM – Dr. Anthony Amato

• Exercise – Dr. Ingrid Lundberg

• Dysphagia – Dr. Todd Levine

Afternoon sessions also featured TMA’s medical advisors:

• Autoimmunity, IVIG – Dr. Tahseen Mozaffar

• What Autoantibodies Tell Us about your Disease Course – Dr. Steven Ytterberg

• Myositis and Heart Disease – Dr. Robert Cooper

• Calcinosis – Dr. Lisa Christopher-Stine

After a brief closing session with Bob Goldberg, TMA’s Annual Patient Conference adjourned.

Join us next year in Las Vegas!