From the President
Deanne Gilmur

Happy 1999! This year will be an important one for the TMA. We are, as many of you know, taking a significant step towards our goals by instituting our first Symposium. While there is much work that lies ahead, the Symposium program is rapidly coming together - and it looks very informative and worthwhile.

The 1999 Transverse Myelitis Symposium will offer a platform to accomplish a variety of goals and to reach a wide-ranging audience. The Symposium will be an opportunity to gather together as many people with TM and their families as possible to exchange ideas, network and develop further supports; to share coping mechanisms and resources in order to maximize independence and function; to hear from professionals regarding new and best practices; to share information about accommodations and adaptive equipment; and to hear what research is being done that might impact those with TM. The Symposium will also offer a focussed setting to provide enhanced educational opportunities for medical providers about TM and persons with TM.

Perhaps most importantly, the 1999 Transverse Myelitis Symposium will provide an organized opportunity for people with the TM diagnosis and their families to come together to discuss issues and problems specific to this diagnosis. It also offers an opportunity to educate and involve physicians and other members of the medical community regarding the needs and issues of TM patients. The increasing numbers of TM patients identified in the TMA membership clearly speaks to the need for providing more education, information, support and partnerships amongst providers and patients specific to TM.

The ability for the TMA to continue to act as the catalyst for dialogue on TM related issues and the dissemination of information necessary to increase TM awareness is paramount for the needs of TM patients. Far too many TM patients contact our organization with disheartening tales of misdiagnosis, months until a diagnosis, lack of information about the condition from their providers upon diagnosis, no or limited recommendations for rehabilitation (physical or occupational therapy), lack of compassion regarding pain issues, and even expressed belief from medical providers that the symptoms experienced are "all in the patient's head". More often than not, a person with TM is being cared for by a provider that has not seen a TM case before or "only one a long time ago". TM patient experience seems to indicate that many providers, perhaps since they do not have many cases, do not have the time or motivation to pursue knowledge of the condition or to develop an aggressive treatment team for the patient's best care. TMA believes that patients need to be informed and empowered so they can manage their needs and be an active participant in their care and treatment team decisions so as to ensure the best possible outcomes.

We have identified three basic stages of the condition that require knowledgeable care and response: 1) TM onset, 2) TM recovery/rehabilitation period (time for partial or full recovery usually extends two years beyond onset), and 3) TM long-term living and care. All of these stages, like any spinal cord injury or dysfunction (SCI/D), require specialized attention as they each can bring new issues and concerns. In addition, the need to be informed about relevant research that is underway and the prognosis for viable "cures" is important to many persons with TM, as well as providers.

We believe that this Symposium will meet the needs of persons with TM and providers by focussing on these many critical and pertinent topics.

The Symposium will be held August 12-15^th at the DoubleTree Guest Suites and Inn at Southcenter near the Seattle-Tacoma Airport in Washington State, USA. Thursday evening (August 12) will consist of registration/check-in and an informal reception for participants and their families.

The Symposium's formal program will begin on August 13 opening with a review of current literature on TM. There will be medical specialists to speak about pain management, sexuality, electrical stimulation, medications and future treatments and research. We will also discuss Multiple Sclerosis and the inter-relationship that seems to exist between MS and TM and the diagnostic issues relative to these conditions.

Additionally, there will be a variety of displays by companies and providers specializing in resources, programs, equipment and adaptive devices pertinent to persons with TM (e.g., orthotics, recreational equipment, assistive technology, etc.).

The following day will focus on presentations on issues and problems experienced by individuals with TM and their families, redevelopment of a healthy self, and disabilities resources. The afternoon session will include a facilitated discussion group in which participants will have opportunities to develop supports and share coping strategies.

A TMA banquet is planned, as well as other social opportunities, for TMA members to develop supports and build friendships. The Symposium will conclude Sunday morning with a state and country representative meeting and general membership meeting.

The Symposium will include the participation of experts within the local region, as well as at the national level. Contacts have included:

• Dr. Stephen Groft, National Institute of Health, Bethesda, Maryland;
• Dr. Brian Weinshanker, Mayo Clinic, Neurology Institute, Rochester, Minnesota;
• Jim Bowen, M.D. and Steven Kramer, M.D., University of Washington, Department of Neurology, Seattle, Washington;
• Linda Yates, Director, Children's Treatment Unit, Good Samaritan Hospital, Puyallup, Washington;
• Heather Hepdon, Assistant Director, Washington State PAVE (Parents Are Vital in Education), Tacoma, Washington;
• Augusto Odone, President, The Myelin Project, Washington D.C.;
• Maria Amador, Program Coordinator, Information and Referral, The Miami Project, Miami, Florida;
• Douglas Kerr, M.D./Ph.D., Chief Resident Neurology, Johns Hopkins Hospital, Baltimore, Maryland;
• Nancy Hylton, PT, Children's Therapy Center of Kent, Kent, Washington;
• Don Bethune, CPO, Cascade Prosthetics, Bellingham, Washington;
• Doby Hall, Director of Field Services, NORD, New Fairfield, Connecticut;
• Dianne Wagener, SKIFORALL (non-profit), Bellevue, Washington;
• Charles E. Levy, M.D., Department of Physical Medicine and Rehabilitation, The Ohio State University, Columbus, Ohio;
• Joanne D. Lynn, M.D., Multiple Sclerosis Center, The Ohio State University, Columbus, Ohio.

Your TMA Board of Directors has established several goals for 1999, most of which will be accomplished through the Symposium. These include the following:

1. Increase information, support and condition management mechanisms available to participants of the Symposium;

2. Increase awareness of TM to the professional/medical community and to increase knowledge of supports, resources and treatment needs;

3. Increase the partnership of the TMA with the medical community by increasing Medical Advisory Board appointments and by developing ongoing relationships to include research; and

4. Develop ongoing local supports.

Registration materials will be forthcoming in the very near future. Symposium registration fees will cover minimal expenses; participation in planned dinner/lunch programs will be optional with separate costs identified in the registration packet. A block of rooms will be reserved for Symposium attendees with special event rates ($119.00 per night for single/double occupancy, $124.00 per night for triple/quadruple occupancy). The facility has 13 accessible rooms available (11 at the Guest Suites event site and 2 at the adjacent Inn). Specific bath and toilet adaptive equipment will be available for those needing such accommodations. The facility provides regular shuttle service from the Seattle-Tacoma International Airport. Wheelchair accessible shuttle service will be available from an independent provider for a small fee. These details and more will be provided with the registration materials. This first Symposium will be an important opportunity for participants to become involved in the continued growth and development of the TMA. I hope that many of you will be there to join in this process. We need you! Throughout these past four years, I have been overwhelmed by the courage, strength and graciousness that you have exhibited during difficult times. To meet many of you face to face will be a gift to look forward to. Your participation in this Symposium will be significant to the future of the TMA, the treatment of persons with TM, and our partnership with the medical community. I hope to see you in August!