From the Editor

I had every good intention of getting this newsletter completed and mailed by the middle of July. Like the rest of you, I am searching for the great cosmic balance in life -- the full-time job, the part-time job teaching two courses for the university, being a parent to my two sons (19 and 17) who think they live on Yasgur's farm.... Having 50 kindergarten students offers Pauline ample opportunities to develop good strategies and patience for dealing with me. I apologize for the late publication and hope that it proves to be worth the wait.

This issue of the newsletter contains a wonderful article written about transverse myelitis as a collaboration of Drs. Levy and Lynn from The Ohio State University. We believe that you will find the information extremely valuable and we are most grateful for their contribution. As we are a new organization, we have some very exciting information to report about our Association. There are articles about our not-for-profit status, our new logo, the Transverse Myelitis Internet Club and a new web site for the TMA. The TMA members contributing to the In Their Own Words column provide us with some insightful and sensitive perspectives on their experiences with TM. There is an article reporting the progress of the TMA survey with a brief description of some results. Our first Treasurer's Report appears in this newsletter. There is also a new column called Member Q&A which will provide a forum for our members to share information through the newsletter. Finally, we have some important announcements regarding our Board of Directors.

Most of my work for TMA is devoted to responding to people who contact us looking for help -- information and advice. There is so much that needs to be done -- the newsletters, the brochure, the membership directory, the survey research -- but these contacts are a constant reminder about our purpose. To understand the nature of these contacts, you only have to think about your own fear, anxiety and concern when you were told that you or your family member had TM.

Over the course of the past eight months, I have received beautiful letters and phone calls from many of you. I am always touched by the kindness and compassion of our members. I would also like to thank all of you who sent postage and made financial contributions. Your generosity is greatly appreciated by all of us.

My greatest frustration is that we have wonderful offers of help from many of our TMA members and have not been able to marshal our resources to put these offers to good purposes. Deanne and I struggle with this issue often. This is one area where we know we need to improve and we will work to provide opportunities to put your energy, creativity, skills and experience to good use for the Association and for each other. I ask that you do not become discouraged when there is not an immediate acceptance of the offer for help -- and I ask that you continue to make that offer known to us. We will respond positively to these offers. There is much work to be done and many worthwhile projects to tackle. We are getting there, and in the meantime, we ask for your patience.

Pauline and I wish all of you the best; please take good care of yourselves and each other.

Letter from the President

Can it be that since our last (and debut) newsletter was distributed our "ranks" have more than doubled? It is gratifying that so many with the transverse myelitis diagnosis are finding our developing organization; at the same time, I am concerned that there are so many who are diagnosed and have received little immediate information or support from their medical providers. The need for information is, to a large extent, why we exist. I have been working on improving and updating the packet of materials that I send when we are first contacted by a person with TM. The Transverse Myelitis Association brochure has been completed and is now in the early stages of becoming "photo ready" for printing. In addition, the bibliography is being updated with only the most recent research articles included. Sandy has been working on the membership directory, amongst many other Association projects. The directory will be sent to all of our members and will also be part of our initial contact packet.

We welcome Debbie Capen as our new Secretary. We are very pleased to have Debbie as an officer of the Association and know that she will bring energy and creativity to the position! To the people who have generously offered to take on officer's positions or other TMA responsibilities, I believe I can speak for the entire Association -- we thank you very much and look forward to your assistance. I also want to thank those who generously made contributions to the organization. We now have an organization account in which all contributions have been deposited. We have also accomplished the filing of our 501(c)(3) application and we have learned that any contributions made to our organization since our founding date (November 25, 1996) are tax deductible (see related article on page 7).

Sandy and I continue to be contacted by many who are newly diagnosed (or family members) with TM. Each person has many questions, many of which I cannot answer. I know that we would benefit from each others' experience and information. So, I am asking that you send your questions to Sandy or me for inclusion in the upcoming newsletters. When you read the questions in the newsletter, if you know a response, please send it to Sandy or me and the responses will be included in the next newsletter. In this way, we hope to use the newsletter as a mechanism to share coping strategies and treatments.

Many persons are struggling with employers who may not understand the fatigue and discomfort associated with even a "recovered" TM condition. Please make sure you understand your rights under the Americans with Disabilities Act (ADA) and request accommodations as needed. Every state has a disability office; contact this office to find out how you might be assisted. This is an issue we will address in more depth and detail in a later issue of the newsletter.

September 26th marked the 4th annual get together of families in the state of Washington with a member diagnosed with TM. This get together was held at Camp Prime Time, located on the east side of beautiful White Pass in Washington's mountains. This weekend retreat is a regular event that we hope more will enjoy with us in years to come. We encourage you to find those in your community who have TM. This search will be made easier with the publication of the membership directory in the near future. You can help each other by sharing information -- or by just being there for each other.

My best to all of you!!!!

Member Q&A

The following are the first questions to be included in our Member Q&A column. If you know answers to these questions, please send them to either Sandy or Deanne. Members' answers will be published in the next newsletter.

1. What are the benefits and risks of cyclosporine?

2. Which medications have you taken that have been effective in treating pain you have experienced from TM? If you are taking medications in combination, please identify the combinations and also provide dosages. What other treatments (besides medication) have you used to effectively manage pain?