Contacts:
Deanne Gilmur: 253-565-8156
Richard Gilmur: 253-565-8156
TMA Web site: www.myelitis.org
Date of Release: December 20, 1999
The Transverse Myelitis Association (TMA) has completed 5 years of service to individuals with transverse myelitis (TM) and their family members. The 5th year was capped with the celebration of the TMA during its First International Symposium held August 12 - 15, 1999 in Seattle, Washington. The Symposium was a milestone event in the growth and development of the Association. The Symposium offered a focused setting to provide enhanced educational opportunities for medical providers about TM and persons with TM. The Symposium also provided a unique forum which enabled people with TM and their families 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.
TM is a devastating condition that effects persons in a variety of ways. It is a neurological syndrome caused by inflammation of the spinal cord and may occur in isolation or in the setting of another illness. Symptoms include back pain, numbness of the legs, headache, and rash. Typically the outcome is eventual paralysis, sensory loss, and bowel and bladder dysfunction. Many individuals report experiencing chronic pain associated with their TM. The condition can occur to anyone of any age, and it can occur at any point along the spinal column. Historically, the scientific research and literature on TM has suggested that it was extremely rare with an annual incidence rate of approximately 1.34 per million population. However, more recent research and scientific literature indicates a more frequent rate of occurrence ranging from 3 to 4 per million population. The TMA is a non-profit organization that offers support services and educational information to persons who have been diagnosed with TM.
The TMA was started in 1994 by Deanne and Richard Gilmur in response to their daughter's TM diagnosis which occurred in 1990. She was eighteen months old at the time. The Gilmurs received little information about TM or support from the medical community at the time of her diagnosis. The ensuing years generally left them to search out their own answers to the many questions they had about treatment, recovery and support systems. Some of the best support they received was from the few families they were able to locate that had either a child or an adult with the TM diagnosis and had already experienced much of what they were just starting to go through. This led to the awareness and the determination that a method to provide the needed support and information for persons with TM and their families had to be initiated. The outcome was the TMA which has now developed into a registered non-profit organization with tax-exempt status under section 501(c)(3) of the Internal Revenue Service tax code with over 1,950 members and a well organized and knowledgeable executive board.
The TMA has grown steadily from the 180 members that existed in January of 1997. The Association has also continued to grow and develop in the way it provides vital and current information to the many individuals diagnosed with TM. The Association provides resources via printed materials, such as newsletters and brochures, and the Web site which was established in 1997. TMA also distributes articles describing the possible causes and treatments of transverse myelitis which were prepared for the Association by a Neurologist and Physiatrist who serve on the TMA Medical Advisory Board. TMA's outreach has also provided the medical community with a valuable resource for themselves and their patients as individuals diagnosed with TM are now regularly referred to TMA by members of the medical community.
The Gilmurs have heard from many members who have expressed their surprise, gratitude and joy in finding the TMA. Many persons with TM, as well as their families, have found a source of support, information and knowledge through the organization. Instead of feeling alone with TM, many have discovered other individuals with TM residing near them through TMA’s membership directory. The Association has brought people together from across the nation, as well as from around the world to share in the struggles and the hopes that ensue after a TM diagnosis.
Even though much progress has been accomplished by TMA in disseminating information to people diagnosed with TM and to providers, the TMA Board believed that there was still a need to elevate the general awareness of TM and TMA. In response to this need, TMA developed its first major Symposium that was held in Seattle, Washington on August 12-15, 1999. This Symposium focused on TM treatments, cure research, and supports. The Symposium also discussed Multiple Sclerosis (MS) and the inter-relationship that seems to exist between MS and TM and the diagnostic issues relative to these conditions.
As a result of the Symposium and the goals set by the Board of Directors, TMA is strengthening its organizational support and advocacy for cure research. This is a logical addition to TMA’s goals and objectives and the result of the natural evolution of TMA’s growth and maturation as an Association. The continued development of critical partnerships will facilitate implementation of this vital outcome; a cure for TM and other spinal cord injuries and dysfunctions.
TMA’s relationships with the medical community have been instrumental in advancing the awareness of TM. Johns Hopkins Hospital has recently created the Transverse Myelopathy Center in Baltimore, Maryland which is the first clinic developed and dedicated to transverse myelitis treatment and research. (Contact Douglas Kerr, MD, Assistant Professor of Neurology, Co-Director, Transverse Myelopathy Center, 410-955-3730 or visit their Website at: www.med.jhu.edu/jhtmc.) TMA has also developed strong ties with The Myelin Project located in Washington D.C. which is dedicated to promoting research and cures such as remyelination and nerve regeneration for demyelinating diseases. (Contact Augusto Odone, Founder and President, 202-452-8994 or visit their Website at: www.myelin.org.)
For more information on the Transverse Myelitis Association, contact either Deanne or Richard Gilmur at 253-565-8156 or visit the TMA Website at: www.myelitis.org. Information on the TMA’s Board of Directors, Medical Advisory Board, and the condition of transverse myelitis is available upon request.