2009 Annual Patient Conference

September 10-12, 2009
Charlotte, NC

Thursday, Sept. 10

The smell of barbecue was in the air as TMA members arrived at the Hilton City Center just as downtown Charlotte was preparing for its annual barbecue festival. A timely health page story in the “Charlotte Observer” prompted by an interview with Charlotte resident and TMA KIT member Anda Cochran drew an unprecedented number of last-minute attendees and newly-diagnosed patients seeking information and support.

As patients and caregivers greeted old friends at registration, the Conference was already getting down to business, with one-on-one and group counseling by Michelle Vogel of ADI Health, who continued to advise members with questions about public and private benefits throughout the Conference.

At 12:30 pm, the group sessions began, with TMA Executive Director Bob Goldberg’s traditional session for first-time Conference goers. In the Orientation for first-time attendees, members heard that the informal interactions that take place between sessions would prove to be just as valuable as the information delivered in the formal Conference sessions.

At 1:00, everyone divided into groups by disease types for informal “get acquainted” sessions led by a facilitator with the same disease. Caregivers attended a session led by a fellow caregiver.

Everyone came together for a unique Conference kick-off session, led by patient advocate, musician and comedienne Carla Ulbrich, whose “sick humor” gives a comic twist to situations all-too-familiar to those suffering from chronic autoimmune diseases.

The breakout sessions followed:

• Conserve your energy with devices and modifications with Anne Dickerson, OT., Ph.D., OTR/L. FAOTA

• What to expect from a clinical trial by IBM patient Mary Jane DeLauder and Dick DeLauder

• Caregivers cope with stress with PM patient and counselor Andrew White

• Social Networking offers support, led by TMA Member Services Manager Quineesa Smith and North Carolina KIT Group Leader Graham Rogers. Patients who attended the social networking session learned new ways to use the internet to connect with each other. Topics discussed were using Twitter and Facebook; getting started with blogging; using TMA’s Community Forum to make connections. They also discussed how to join TMA’s live discussions, including how to submit questions in advance and in real time for TMA’s medical experts.

A meeting of KIT leaders and potential KIT leaders with Quineesa Smith and Bob Goldberg ended the planned conference sessions for the day. This session is an annual opportunity for KIT leaders to get help, advice and support from other KIT group leaders.

Also at the meeting, possible new and rejuvenated groups were identified: St. Louis/Southern Illinois, Ohio, Northern West Virginia and Western Pennsylvania. These groups will join the network of other active support groups around the country.

Friday, Sept. 11

Dr. Anne Dickerson and a group of graduate occupational therapy students led the “earlybird” session Fall Prevention and Recovery , followed by breakfast where Pat Nowak (with the help of Bitka, an Airedale) of Carolina Canines, introduced the group to the potential of service dogs as an aid to independence.

The morning was packed with Conference sessions, beginning at 9:30 am.

• Myositis for beginners with Dr. Mammen

• Emotional aspects of chronic disease with Andrew White

• Practical strategies for Caregivers with Dr. Dickerson and students

• Autoimmune Disease, Diet and Stress with Rita Anita Linger, CEO, Emergent Capabilities

Mid-morning sessions followed:

• Understanding medications with Robert Wortmann, chair, TMA Medical Advisory Board.

• Maintaining intimacy with Andrew White

• Driving safely with Dr. Dickerson discussed Driving and Medications, Maintenance, Community Resources, Strategies, and Fitting the car to the driver.

• IVIG: How it works and why it can help some that have myositis – Leslie Vaughan.

At lunch, TMA board member Peter Della-Croce spoke about the need for planned giving to support the long-term viability of a nonprofit organization such as TMA.

Early afternoon sessions focused on individual disease management:

• Managing your disease – Polymyositis – Polymyositis with Dr. Mammen

• Managing your disease – Dermatomyositis – Dermatomyositis with Joseph Jorizzo, MD

• Managing your disease – inclusion body myositis – Inclusion body myositis with Larry Phillips, MD

The day ended with an opportunity for everyone at the Conference to ask questions of TMA’s board of directors.

Saturday, Sept. 12

The day began with an “earlybird” session. Herb Schley, an IBM patient, spoke about his personal experience with acupuncture and balance. Schley’s experiences will be summarized in the fall edition of TMA’s newsletter, The OutLook.

After breakfast, the medical panel addressed the entire Conference assembly:

• TMA’s research program with Dr. Wortmann

• Current myositis trials, and what’s ahead with Dr. Mammen

• Gene therapy for myositis with Brian Kasper, PhD

• How research in other diseases advances understanding of myositis treatments with Dr. Phillips

Mid-morning sessions followed the medical panel:

• Environmental factors (including statins) with Dr. Mammen

• Exercise for every level with Kerry Duffy, MDA Clinic, MHS, PT, ATP

• Personal nutrition with Beverly Jordan, Nutrition Research Institute

At lunch, lucky members were awarded quilts, gift bags and baskets from several different raffles. Dr. Jei Fi Wang gave an introduction to Chinese medicine, a preview of his session later in the day.

Following lunch, members broke up into groups for the afternoon sessions:

• Myositis and Cancer with Dr. Mammen

• Introduction to aquatherapy with Kerry Duffy

• Treating myositis with Chinese medicine with Dr. Jei Fi Wang LAc, OMD, CH

TMA’s 16th Annual Conference concluded with a patient panel of Renee Lantner, Graham Rogers and Steve Morris, and remarks by Bob Goldberg and Board of Directors Chair Jan Schuler. TMA’s 2010 Annual Conference will be in St. Louis, Missouri!