September 6-9, 2007
Bellevue, WA

Friday, September 7
Patients find support and information in first full day of sessions

Myositis patients from literally all over the world gathered in beautiful Bellevue, Washington, for their choice of 15 sessions Friday. Please check back often as sessions are posted in their entirety.

Those at Conference for the first time began the day early in the “Orientation” session. Executive Director Bob Goldberg advised them to learn from each other as well as the presenters while they had the rare chance to learn from the experience of veteran members.

At breakfast, everyone followed his advice, meeting old friends and welcoming new members at tables arranged for seating by geographic region.

As the first round of sessions began, members learned from veteran TMA medical advisors as well as myositis experts from the Seattle area:

• Chet Oddis, MD, TMA board member and medical advisor, presented “Myositis 101” with an overview of myositis symptoms diagnosis, treatment, and expected outcomes.
• Wendy Baer, MD, a Seattle psychiatrist, gave those in her session, “Emotional challenges of chronic disease,” some tools for facing change with hope and energy.
• John Ravits, MD, a Seattle neurologist, had some tips from his side of the desk in “Treatment goals, options and choices.” Ravits told members about the ways physicians choose the best treatments possible for each individual case.
• Cate Brummett, DPT, a rehabilitation specialist, advised those in her sessions to find the exercise program they can best maintain throughout the disease course in “Exercise for every level.” Brummett counseled members – especially those taking medications – to choose activities that maintain muscle flexibility as well as strengthening bones.
• Michael Weiss, MD, who directs a Seattle diagnostic laboratory, discussed ways in which the myositis screening tests help plot the course of treatment as well as pinpointing the disease in “Diagnostic testing: helpful and revealing for treatment.”
  

The concurrent morning sessions were followed by shorter “mini-sessions” where some special interests were explored in more detail:

• Understanding IVIG, autoimmunity and myositis, presented by Dr. Tahseen Mozaffar, MD, gave those under treatment or considering treatment information about accessibility and implications.
• Introduction to Chinese medicine, presented by MaryLee Calmes, reviewed the powerful notions of balance and peace revered by eastern medical professionals.
• Be prepared: the myositis patient’s emergency tool kit, a session researched and presented by Seattle KIT leader and patient Ann Robertson, encouraged members to anticipate natural disasters and medical emergencies.
• Grassroots advocacy: making your voice heard, led by advocacy expert Patrick Collins, gave myositis advocates effective tools for addressing problems of medical access, public recognition and suitable accommodation.

A dynamic and informal JM program ran concurrently for most of the day, led by Seattle pediatric rheumatologist Helen Emery, MD, MBBS, with activities for children and answers for parents. In addition to Dr. Emery, parents had the chance to question other specialists:

• Dr. Wendy Baer about family dynamics when one child has a chronic disease;
• Dr. Cate Brummett about the effects of medication, especially prednisone, on young bones;
• Dr. Tahseen Mozaffar about IVIG in children.

There was ample time for visiting over lunch, served at tables set up in session rooms and in the registration-vendor area; or members could attend some special-interest lunch sessions for KIT leaders and bulletin board users.After lunch, the concurrent morning sessions repeated, with some important additions:

• 18 times to protect your insurance, presented by Kim Bernstein of the ACCESS program, provided an overview of life changes that affect insurance coverage and described the legal services ACCESS provides for those with chronic disease and ongoing needs.
• Dysphagia, presented by Deanna Britton, MS, CCC-SLP, updated members on this important complication and gave recent research results as well as tips for managing swallowing difficulties.

Later in the day, members met with board members for a chance to voice questions and concerns to TMA's governing body; and munched on a Mediterranean-themed buffet at the Conference opening reception in the beautiful Skyview Ballroom.

 

Saturday, September 8

Conference participants filled the grand ballrooms at the Bellevue Hilton Saturday to hear TMA's medical panel. The focus this year was research, and panel members talked about work being done in the basic science of inflammatory, degenerative and autoimmune disease as well as treatments.

• Animal models and stem cells were discussed by Kanneboyina Nagaraju, a veterinarian as well as a PhD working at Children's Hospital in Washington, DC. Dr. Nagaraju explained how myositis is mimicked in the lab. He also demonstrated how stem cells might turn off the disease process in myositis patients.
• In Understanding research in IBM and PM, Dr. Andrew Mammen, co-director of the Myositis Center at Johns Hopkins University in Baltimore, reviewed relevant research of the past two years, with an eye towards those studies with future promise.
• In Answers from dermatomyositis research, Dr. Richard Sontheimer of the University of Oklahoma Health Sciences Center discussed the ways in which recent research findings have changed and improved treatment.

Patients were able to ask questions about their specific form of myositis in informal sessions following the Medical Panel, when they separated into disease-specific groups.

At the Conference luncheon, Executive Director Bob Goldberg recognized members, families and friends who raised money and promoted public understanding of myositis through local campaigns. He also recognized the contributions of the Seattle KIT group in the planning of the Seattle conference and gave a brief tribute to Bob Foseid, a key Seattle Conference planner, who died in July. Foseid's family members joined TMA staff and members at the luncheon. Lunch was followed by dessert and coffee in the vendor's hall, and then by the afternoon sessions:

• Dr. Chet Oddis spoke on Coping with prednisone, a subject always of tremendous practical interest to myositis patients. Dr. Oddis also explained the mechanisms by which the drug both alleviates symptoms and triggers other events.
• Medical activist Michelle Greer told her session members how to Be your own best advocate in finding access to medications and care.
• Dr. Sontheimer reviewed the variety of treatments available for topical and systemic treatment in Skin care for DM patients.
• Out at the pool, aquatherapist Harriet Ott demonstrated how water exercise is a safe and effective way for myositis patients to maintain flexibility and strength in her water therapy session.
• Seattle acupuncturist Augusto Romano demonstrated ways to use Acupuncture for pain relief and balance in a session aimed at exploring non-medical interventions for myositis.

A final round of special-interest sessions concluded the patient-education portion of the Conference:

• Andrew Mammen spoke about Myositis and cancer, with a view towards appropriate screening in myositis patients and an explanation about how the cancer itself may trigger the autoimmune defense that leads to myositis.
• Members continued their introduction to complementary treatments in Time-honored and natural pathways to health, a session conducted by Seattle naturopath Sharum Sharif.
• Seattle KIT group members demonstrated their most helpful tools in Practical solutions for myositis patients.
• Michelle Vogel and Melissa Schweitzer counseled patients on navigating the maze of issues surrounding Medicare, employment, disability and insurance in their patients' rights workshop.

While patients went to disease-specific sessions, a Session for Caregivers offered discussion and support, moderated by longtime professional caregiver Evy Burris.

Throughout the afternoon, those at Conference visited vendors, bid on silent auction items and bought 50-50 raffle tickets. Conference presenters were honored with a special dinner at the hotel Saturday evening.

Sunday, September 9

Annual Conference concludes
We're going to Denver next year!

Come to Denver in 2008 for TMA's dazzling 15-year anniversary celebration and Annual Conference! Join patients, physicians, and TMA board members for an educational and joyous event in the mile-high city September 18-21, ending with a special observance of Myositis Awareness Day.

TMA's 2007 Conference ended on an upbeat, inspirational note, as each patient panel member told the audience what they'd learned from their experience with myositis.

• Shannon Young, dermatomyositis patient and Oregon television anchorwoman, who tried and then had to abandon a 10-mile race before coming to the Conference, told the audience that "winning doesn't always mean finishing the race." Sometimes, she said, just training for it is a victory, one of many small victories that she's accumulated since her diagnosis. She included learning to play the banjo and kayaking as other personal accomplishments that enrich her life and nourish her spirit.
• Madge Franklin, an inclusion-body myositis patient and mother of seven children, shared her story. Since her diagnosis, each one of her children -- and many of their friends -- has pitched in to help in some way to support her efforts to raise money for myositis research and education. Franklin continues to pursue the personal interests that bring her joy, including a bridge tournament where her friends compete, with a portion of the winnings also going to myositis research and support.
• Steve Morris, a giant-cell myositis patient, recounted his experiences both before and after diagnosis. After recounting the events of a disastrous year that included an unexpected divorce and other minor disasters, Morris found himself unable to work at his job as a middle-school teacher when myositis put him in a wheelchair. A year later, he completed a successful 3,000-plus mile motorcycle ride to Sturgis, South Dakota. "Don't focus on myositis when you think about your dreams. Find a way to do what gives you strength and satisfaction," he said.

Executive Director Bob Goldberg invited everyone to Denver for TMA's anniversary celebration, and TMA board chairwoman Jan Schuler, caregiver for her husband, an IBM patient, shared what the conferences mean to her. "I leave every one with renewed spirit and hope," she said.