From the Editor
Sandy Siegel

I hope that you are all doing well. With the publication of this fourth newsletter, we are closing out the second full year of our regular communication to our Association members. We are grateful that so many people are finding us from all over the world. By the time this newsletter is in the mail, our membership will have grown to well over thirteen hundred people. As our numbers grow, so too do the responsibilities of the Association.

We are continuing to collect and enter the TMA survey information. I would like to extend special thanks to Jessie Danninger for all of the hard work she has performed in entering survey data. It is a very laborious and time-consuming task. Jessie is a SAS expert, for those of you who understand the world of statistics. She is going to be conducting our statistical analysis once we have the information entered and coded. Until then, we are making progress on the data entry phase of the research. If you have not completed a survey, you may get a copy of the survey and instructions from Deanne or you can download a copy from our web site. Please take the time to complete a survey and mail it to me, if you have not already done so. If you want doctors to understand TM, you are going to have to be willing to share information about your experiences; it is the only way they are going to learn about this condition. If you would be interested in assisting with the research project, I am in need of help with the data entry. If you have a computer with MS Excel loaded on it and if you have some time to enter information, please get in touch with me. I would greatly appreciate the help.

There are two other important continuing projects that were initiated by the Association this past fall. We are collecting information to build a database of neurologist referrals. We asked you to consider whether you would refer your neurologist to other members from your area who have TM. If you would make that referral, we asked you to contact their office and to be sure that they have an open practice and that they would consent to your sharing their name with the Association and other members. We have, thus far, had an underwhelming response to this request. If you are satisfied with the care you are receiving from your neurologist, please consider taking the time to get permission from them to send us their name, address, and phone number. A referral to a good neurologist, and one who has had some experience with TM, is one of the most frequent requests the Association receives. At this stage, you are our best and only source of information regarding neurologists who treat TM patients. Please help each other out by sending me this very important information.

The Association is also collecting information in order to publish a children's directory. At present, I have received very few responses. Children with TM often have different physical and emotional issues to deal with than an adult with TM. There are certainly differences in family issues that arise. We often have parents who are seeking out other families who have a child with TM. We maintain that one of our most important goals is to offer a support network to people with TM and their families. To achieve this goal, again, we need your efforts and support. We know that a considerable number of our 1300 members include children with TM. We would like to facilitate the support network between children with TM and families of children with TM by making a children's directory available. We will take every precaution to limit the distribution of the directory. It will only be mailed to families who identify that they have a child with TM and who share their own information with the Association. Please take the time to send me your child's name and age, and your name, address and phone number, if you are interested in being listed in the children's directory.

Both the neurologist information and the children's directory information can be sent to me on the TMA response form that you received in the last newsletter. You do not need the form, however, to send me this information. You may also send me the information through e-mail.

There are some important and exciting events scheduled for the near future that should increase the public's awareness of Transverse Myelitis and our Association. This education and recognition is so important for the Association's goal to be a catalyst for research into the causes and treatments of Transverse Myelitis. Pam Schechter, a TMA member from Flushing, NY, has advocated in the State of New York for a Transverse Myelitis Awareness Day. There is going to be a resolution sponsored by the New York Legislature in Albany this June. If you are a resident of New York, you should be contacted regarding this special event. Pam is preparing an article for the next newsletter that will describe the events in New York. The Transverse Myelitis Support Group of Australia is planning a similar event in the near future. We will also provide you with a description of the events taking place in Australia.

Much of our work this year has focused on the Symposium scheduled for this August in Seattle. The Association has expended a great deal of effort in our first serious fund-raising activities. We are learning how competitive the market is for worthy-cause dollars. It has been an uphill battle, and there have been very few successes, but we are not discouraged. We are learning the ropes, we are meeting with and telling our story to the right audience, and we believe we are laying a good foundation for future efforts. Deanne, Dick and Paula have also been working feverishly making the logistical arrangements for the Symposium and putting together an interesting and educational program. The Symposium weekend is also going to offer many of us an opportunity to meet in person for the first time after years of communicating over the phone, by letter and by e-mail. It will certainly be a very emotional and important occasion. If you are on the Internet, you can monitor the progress of the Symposium plans through a link Jim has created from the TMA web site. Jim will update the Seattle Symposium web site as new information becomes available.

Pauline and I had the opportunity to meet Sarah Ferguson, the Duchess of York, in January 1999. We were guests of Dr. Charles Levy, the world renowned Physiatrist who serves on the Medical Advisory Board of The Transverse Myelitis Association. Sarah was invited to The Ohio State University Medical School, and was involved in an all-day tour of the facilities. Dodd Hall, the rehabilitation facility at OSU, was a part of her tour. Dr. Levy had invited a number of Dodd Hall "alumni" to be a part of the tour. As the doctors and dignitaries escorted Sarah around the building, they were able to introduce her to people who had gone through rehabilitation. In this way, she had the opportunity to learn something about the importance of rehabilitation, and not just see a bunch of equipment in a building. Pauline lived at Dodd Hall for six weeks and went through an intensive rehabilitation program there. She was also in outpatient rehabilitation at Dodd for almost a year. Dr. Levy regularly calls on Pauline to come and "visit" with patients at Dodd who might be having a difficult time with their therapy and with their illnesses. She has met with TM patients at Dodd Hall. Dr. Levy wanted Pauline to attend and to meet and talk with Sarah. I was invited to attend as an ornament for Pauline; and a lovely ornament I was indeed. (There is a picture of Pauline, Sarah and myself posted on the TMIC recreation and activities page, the link from which may be found at the bottom of the TMA web page).

We did meet Sarah and had a very good conversation with her. Pauline described Transverse Myelitis and what had happened to her. When she had completed her explanation, Dr. Levy very generously described our work with The Transverse Myelitis Association. I also explained to Sarah that we had quite a few members from England in our Association. At that point, she asked if she might not be of assistance to us -- and I immediately responded that she certainly could. I offered to give her a call. She did not give me her telephone number, but she did give me a way to reach her. And I will send her a note about the Association with a few suggestions for how she might be able to help us out. Pauline and I were very impressed with Sarah Ferguson. She is a very down-to-earth, caring, compassionate and kind person. She is very bright and very honest. Sarah was also impressed with the group of people who were in attendance -- the Dodd Hall alumni. And with good reason. There were some very courageous people in that room -- and, of course, I believe that Pauline is at the top of that list.

The Association is grateful to those who continue to support our efforts by donating their time and expertise to write articles for our newsletter. This issue of the TMA Newsletter contains a wonderful article by Dr. Norman Uretsky and Cheng-Huan Chang from the College of Pharmacy of The Ohio State University. Medications make up such a significant element of the treatment regiment for people with TM. We thought this was an important subject to begin to explore with our members. Dr. Uretsky has also very graciously consented to write a regular question and answer column for the newsletter. If you have any questions about your currently prescribed medications, those you have read about others taking, or those medications that your doctors have considered prescribing for you, please send those to me and Dr. Uretsky will attempt to provide you with answers in the next newsletter. Drs. Arnett and Rabold provide us with their second in the series of articles about the process of adaptation to the effects of severe injury and illness. Dr. Lynn has offered some very thorough and helpful responses to the interesting questions that were sent by our members for her question and answer column. Finally, the In Their Own Words stories for this newsletter are remarkable. We have a very special collection of stories, and some from people who have had TM for decades. The experiences you will read about are quite emotional and thought provoking. The stories and experiences from the In Their Own Words column continue to demonstrate the resiliency and courage of our members.

The next communication you receive from the Association will be the registration materials for the TMA Symposium. Not everyone is going to be able to make the trip to Seattle. There will be a multitude of reasons why people are unable to attend the Symposium. For those of you who cannot afford the cost of making the trip, there is a wonderful article by one of our members who describes some of the ways she has planned personal fund-raising to make this Symposium possible for her. Please read Drema's thoughtful and creative article and consider how you might be able to put into action some of the suggestions she has offered us. We are surrounded by friends and family who would help us, if we only knew how to ask. Drema offers us some wonderful ways to make it easier to ask.

I hope that you are able to make it to Seattle. If you are not able to attend, we will find ways to share the experience with all of you. We will certainly find ways to share any educational and research materials that are made available at the Symposium. I am looking forward to meeting all of you who are able to attend. Take good care of yourselves and each other.