Deanne has done a wonderful job of summarizing the Seattle Symposium for those of you who were unable to attend. There were informative presentations made by the doctors and other specialists, and the Association accomplished some very important business over this weekend. But if you asked anyone who attended the meetings, all would tell you that the most memorable part of the symposium for them was meeting others with TM and establishing relationships that will last a lifetime. I asked Debbie to write down her thoughts about the Symposium from this perspective, in order to convey some of the very emotional experiences people shared during these meetings.

The First International Symposium of The Transverse Myelitis Association was a "dream come true." The dream began in February 1998, when the National Organization of Rare Disorders (NORD) invited The Transverse Myelitis Association to attend a joint conference with FOP (Fibrodysplasia Ossificans Progressiva) patients. It was our first lesson on "how to run a conference," and it was also our first opportunity to meet others afflicted with transverse myelitis. Most of the Board Members of TMA attended this conference in Columbus, Ohio.

This TMA/NORD conference was very educational; we learned how people with severe and worsening disabilities survive in this able-bodied world in which we live. The highlight of attending this conference was meeting others who were living and coping with transverse myelitis. There was only a small group that was able to attend; enough to fill one banquet table. Way back then, over a year ago, the emotional bond was strong and unforgettable. We were able to talk to others who were experiencing the same "numbness/tingling," "burning/freezing" sensations, all of those terms to which only another tm'er could relate.

We had the opportunity to meet Dr. Levy and Dr. Lynn for the first time, and discovered what caring, down-to-earth people they were. And as an added bonus, discovered that Dr. Levy is a VERY talented fiddle player! I remember when he sat with us at our table at the banquet, the small group of people with transverse myelitis, he told us that he enjoyed sitting with us, because we were the "fun" table!

At that time, we determined an approximate date to have our First International Symposium, to be held in the summer of 1999. Inevitably, the location of the symposium was to be Seattle since Deanne and Dick Gilmur, the founders of the TMA, and Paula and Jim all live in Washington. Deanne, Dick and Paula did the majority of the "legwork," putting together what would be an "awesome" (to quote one member) and educational symposium.

Fast forward to August 12-15, 1999. The symposium had begun. People from all over the world came together to meet others with transverse myelitis. Most of the attendees were from all over the United States, but people also traveled to Seattle from Canada, Ireland, England, Wales, Venezuela and Australia. All of us were overwhelmed with the closeness that we felt for one another.

The speakers that Deanne and Dick invited to the symposium presented their information so well. They spoke in plain English, and did not use a lot of medical terminology. They were easy to understand. They answered many of our questions; many of these questions which had previously been unanswered for such a long time.

During the breaks between the speakers, we were able to visit with all of our "brothers and sisters." I don't want to make this sound like a "religious revival," because it was nothing of the kind. But when you sit down at a table with a total stranger, and begin to ask questions about how they came to "discover TM," you suddenly find yourself saying, "I know exactly what you are going through." I never thought I would ever meet another person who could understand my experiences!

After only a day or two, that "fun table" from over a year ago was a "fun room" full of long-lost "family members." So many people with transverse myelitis in the room, each one with his/her own personal experiences to share with the rest of us. The hardest thing for me was meeting the children who have to live with transverse myelitis. One of the speakers in the panel discussion, named Hayley, was only 17 years old. She had been diagnosed at four months of age. She felt that she was one of the "lucky ones," because she had never known what it was like to be "normal." She felt sorry for the adults who had gone through their entire lives without disabilities, and then lost normal functioning, having to adapt to a new way of life. We, as adults, felt that we were the lucky ones, because we at least knew what it had been like to run, jump, skip; do all the things that kids do. It seemed as if there was nobody in the room that was wrapped up in "self-pity." We all felt in our own way that we were "lucky ones." It was like being on an "emotional high" for four days.

I was able to reunite with old friends and made many new friends. I hope that even more people will be able to attend the conference in Baltimore in July 2001. I am looking forward to my "family of friends" continuing to grow. It really has made living with transverse myelitis a lot easier, knowing that I have so many friends who share in my feelings and experiences.

The complete agenda of presentations made at The Transverse Myelitis Association's First International Symposium is now available as a five-tape Video Set. The Association has priced the Video Set to recover the cost of copying the tapes, as well as the materials and shipping costs. We are not able to sell tapes of certain portions of the Symposium or particular presentations. The cost of producing various versions was prohibitive; therefore only the entire five-tape set is available for purchase. If you are ordering the tapes in the United States, the cost of the Video Set and shipping is $40.00. The Video Set will be sent to you via the United States Postal Service, Priority Mail. If you are ordering the tapes from anywhere outside of the United States, the cost of the Video Set and shipping is $50.00. The Video Set will be shipped via the United States Postal Service, Small Packet Surface Rate.

To order the Video Set of the Symposium, you must send us your complete postal address and a check or cashier's check made out to "The Transverse Myelitis Association." We cannot send any orders until we have received your full payment for the tapes. For all of the international orders, we are requesting that you use a cashier's check for the amount of 50.00 U.S dollars. All of the VHS tapes will be shipped in NTSC format. We are sorry for the inconvenience that this may cause some of you who live in countries where different formats are used. We are asking that you perform your own conversions of the tapes. The complications associated with our trying to do this and the costs associated with the process were prohibitive.

Your order, complete postal address and check or cashier's check should be sent to:

The Transverse Myelitis Association
P.O. Box 64086
Tacoma WA 98464-0086

Please allow six to eight weeks for delivery in the United States, and longer for international delivery.

Finally, I would like to offer special thanks to my brother, Perry Peltier, who donated a tremendous amount of time to this project. Perry taped the entire symposium and devoted long hours to the process of editing the tapes. The project and the availability of these tapes would not have been possible without his very generous offer of time and creative energy. Perry, we are all greatly appreciative of your hard work and your kindness.