Greetings to all members of the TMA. The glow of the First International Symposium is still with me and I hope in some small way, I can share that glow with those of you who were not able to attend. It was truly a life-changing experience and as so many attendees similarly commented, I felt as though I was enjoying a huge family reunion. Indeed, relationships and supports that will last a lifetime have now been developed for many of us.

The significance of the Symposium for the continued growth and development of the Association, as well as the increased awareness of transverse myelitis (TM) can not be overstated. The professional presentations focused on the three basic stages of the condition: 1) TM onset, 2) TM recovery/rehabilitation period, and 3) TM long-term living and care, increasing our knowledge and understanding of the many varied TM experiences. In addition, and of particular interest to me, were the uplifting presentations about the relevant research that is underway and the prognosis for viable "cures" that were discussed. I must share with you that my husband, Dick Gilmur, and I are believers in the expectation, and the accompanying exhilaration, that within 5 to 7 years nerve regeneration and remyelination research will generate positive results that will be applicable to and benefit individuals with TM.

As a result of the Symposium and the goals set by the Board of Directors, TMA will be strengthening its organizational support and advocacy for cure research. This is a logical addition to TMA's long established goals and objectives to provide support and education about TM, 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.

Speaking of partnerships, TMA's relationships with the medical community have been instrumental in advancing the awareness of TM and in developing some critical partnerships. Due to the publicity about the TMA through the Symposium, as well as the exposure from our Web site, the TMA is regularly receiving inquiries from physicians and other members of the medical community for information and referrals. In addition, some medical providers have started to refer their patients with TM to TMA as a source for information and support. One of the most noteworthy partnerships that developed over the past year is TMA's strong relationship with the Johns Hopkins Transverse Myelopathy Center (JHTMC) in Baltimore, Maryland. The JHTMC was started this past June and Dr. Douglas Kerr, who is a member of our Medical Advisory Board, is also a Co-Director of the Center. This is the first clinic or center in the world developed and dedicated to transverse myelitis treatment and research. By seeing and tracking a large number of patients with TM, the JHTMC will contribute greatly to the increased understanding of TM, its diagnosis and treatment. The center is also dedicated to a comprehensive, multi-disciplinary treatment of TM. For more information about the JHTMC, you can link to its Web site from the TMA Web site. Dr. Kerr also has an article in this newsletter that provides a more detailed description of the services offered by the center, as well as the TM research opportunities that are being pursued by Dr. Kerr at Johns Hopkins Hospital.

Another outcome of TMA's partnership with JHTMC is the decision for both of us to jointly sponsor the Second International Symposium on Transverse Myelitis and to hold the event in Baltimore, Maryland. Our plan is to conduct the Symposium during the second or third week of July 2001 and to offer Continuing Medical Education (CME) credits to medical professionals. By providing CMEs, this event will be yet another milestone in TMA's continued march towards one of our goals, which is to increase TM awareness within the medical field. Planning and coordination activities have already begun. In fact, Dick went to the JHTMC in October and toured Johns Hopkins and accomplished some vital preliminary Symposium planning. The next Symposium is destined to exceed our expectations once again, so we hope you mark your calendars now and that we see you in July 2001 in Baltimore!

While at Johns Hopkins, Dick also participated in several media events about the JHTMC, TM and TMA, and the Cody Unser First Step Foundation (www.codysfirststep.org/). Cody is the daughter of Shelley Unser and race-car champion Al Unser Jr. She was diagnosed with TM in February 1999 at the age of 12. Cody's Foundation has been established to help raise research funds to fight paralysis and to build awareness of TM. Cody and her family have already done much to increase awareness of TM as many newspaper articles have been written about Cody and her condition and TM diagnosis. In addition, the November 29th issue of People magazine contained a four-page spread on Cody and news of her Foundation. The Foundation will be a powerful influence in helping to raise and direct funds for research, and to increase public awareness and improve the quality of life for those afflicted with all forms of spinal cord-related paralysis. The ongoing efforts of Cody, her mother, Shelley, Cody's family, and her Foundation are yet another voice that adds strength to the issues and causes for which we all advocate. Their efforts are very much recognized by me and my husband, and the TMA Board, and they are greatly appreciated as we all continue to work towards the same goals. The TMA goal to develop partnerships includes maintaining a strong relationship with Cody's Foundation. As TMA develops into an organization that is able to fund TM cure research (see, Help Support TMA's Continued Growth And Development article in this newsletter), we must look for opportunities to combine our research funds with other organizations and other funding sources to best support vital research efforts. We must also coordinate our research funding efforts with others to ensure coordination, cooperation, and collaboration occurs amongst the researchers being funded and the studies being proposed for funding. With all this said and the possibilities that increased TM awareness and research efforts can bring, I still find myself feeling that the future never looked brighter.

As we have gained many new members this year, I thought it appropriate to review TMA's past accomplishments. (The following information on accomplishments and past and future goals was discussed in the General Membership meeting during the Symposium and the full text of the minutes are available on our Web site.)

To date we have accomplished the following:

1. In November 1996 TMA became incorporated as a non-profit organization in the State of Washington.
   
2. In 1997 the Medical Advisory Board was created; our first Medical Advisory Board members included Dr. Charles Levy and Dr. Joanne Lynn.
   
3. The initial information packet for new members and interested persons was developed.
   
4. The TMA Membership Directory was developed and distributed to new members; this is consistently being updated.
   
5. The TMA Web site was created.
   
6. In September 1997 the TMA registered as a non-profit organization and received its 501(c)(3) IRS status. This allows us to solicit donations as a tax-exempt charitable organization.
   
7. In 1997, TMA initiated publication of its newsletter with distribution as close to two times annually as is possible.
   
8. A TMA research survey was developed to collect and record TM data.
   
9. In 1999 the New York State Legislature passed a Resolution naming June 6, 1999 as Transverse Myelitis Day.
   
10. In August 1999 the First International Symposium was held in Seattle, Washington.

As you can see, we have accomplished much. The interest, support, and ideas of so many TMA members have made these kinds of accomplishments and growth possible. The Symposium has served as a successful mechanism in helping us reach many of our annual goals. In review, those goals and their outcomes for 1998-99 were:

Disseminating educational information: Our membership has grown to almost 2000 members in 35 countries. These people have all received the initial information packet. Additionally, Board members receive anywhere from 15 to 30 individual contacts per week, requesting information or support from TMA.

Expand the Medical Advisory Board and develop partnership opportunities between TMA and the medical community: In the process of planning the 1999 Symposium, many interested and supportive physicians were contacted and eventually some of those individuals became a part of the medical portion of the program. It has been our intention to add providers to the Medical Advisory Board (MAB) from representative and varied geographical areas and with a growing interest and expertise in TM. One of our newest MAB members includes Dr. James Bowen, Assistant Professor, Director of Neurology Services, Multiple Sclerosis Center at the University of Washington School of Medicine. Dr. Bowen is a MS specialist and researcher, and will contribute greatly to TMA through the application of his MS expertise to the TM arena. Our other newest MAB member is Dr. Douglas Kerr who hails from the Johns Hopkins Neurology Department. Dr. Kerr is an Assistant Professor of Neurology and Co-Director of the Transverse Myelopathy Center. (Additional information about our newest MAB members is found in an article in this newsletter).

Facilitate support and networking opportunities and increase awareness of TM, its impact and the need for additional research: In preparation for the 1999 Symposium, registration and information brochures were mailed to many physicians, clinics, and hospitals. We also advertised in the American Neurology Association's periodical. While these providers did not necessarily attend the Symposium, these advertising efforts served a vital public relations function and helped increase the awareness of the availability of the TMA as a resource to these doctors and their patients with TM. Also noteworthy with regards to the fulfillment of our 1998-99 goals for increasing awareness of TM, was the Transverse Myelitis Day in New York State initiated by the hard work of TMA member Pamela Schechter. This may become an annual event in New York and has developed into a support group that intends to regularly come together. The inaugural Transverse Myelitis Awareness Day in Australia was held on May 12, 1999. The Transverse Myelitis Support Group of Australia is planning their next Transverse Myelitis Awareness Day for May of 2000. Finally, the work of TMA's Web site director, Jim Lubin, has been tantamount in providing information about TM and the TMA to interested persons online. You may have already noticed pertinent information about the 1999 Symposium, as well as news articles on the site. This wonderful information has taken TMA a long way in meeting our networking goals.

As we come to the close of 1999, we are beginning to work on goals that were developed and discussed at the Symposium for the year 2000. They include:

1. Continue to expand the Medical Advisory Board.
   
2. Continue to develop partnerships with other medical providers and treatment/research centers.
   
3. Develop State and National representative activities in at least 6 states and 4 countries.
   
4. Continue ongoing update and expansion of educational materials and the initial information packets.
   
5. Develop enhancements to the Web site and information exchange via the Web site.
   
6. Increase charitable donations and financial support of the organization's programs and activities.

Work on some of these goals has already started. Jim Lubin has added links to important Web sites such as the JHTMC's as well as to other important information and resources. Work continues on the guidelines for State and National representative activities and an information packet of materials for education and support is being developed. I will be completing the task of putting this information together, getting input from other members, seeking approval from the Board of Directors, contacting those people who have voiced an interest in this role, and sending representative packets out in the early part of 2000. We are looking to add materials from the JHTMC to our initial information packet. We are also continuing dialogue with other facilities and organizations as we look for ways to combine our voice with existing efforts to promote funding for research that will benefit those with TM. Also, we are hopeful that our membership will help support the work of the TMA through charitable donations and gifts.

Surveying the accomplishments of the TMA, especially the success of the 1999 Symposium, is so rewarding and so humbling. This community that we all share a part of is strong, sensitive, and supportive. The Symposium was a magical experience that brought many members of our community closer together; together as a family. One participant commented that it was the first time that she had ever met anyone else with the TM diagnosis. Today, she has a TM family to draw strength from. Since the Symposium I have struggled for the words with which to share the impact and the power that this event had on the attendees, including myself. Suffice it to say, we worked hard, shed some tears, and had a lot of fun; just like most families do.