From the Editor

As seems to be my style, I will begin this column with an apology; I am sorry that this newsletter is being sent to you much after its intended publication date. The original intent was to have the newsletters published every six months. How about if I promise to distribute two newsletters in a calendar year? Thank you for your patience and understanding.

In addition to the work on the newsletter, I continue the process of entering the survey data. It is my goal to have the data entered and ready to analyze within a few months. Drs. Lynn and Levy are reviewing the content of the survey to assist us in determining areas that would yield good results from the perspective of the medical community. We fervently believe that the survey work offers us an important tool for learning about TM and for educating physicians, other health care providers and ourselves.

As is noted elsewhere in this newsletter, our membership is growing quite rapidly. We have more than quadrupled our numbers in a year and a half. If the published incidence of TM, as 1 in 1.3 million, is in the ballpark, there are thousands of people in the United States who have this diagnosis. Every decade there would be approximately 2,500 people who are diagnosed with TM. The Association has been in existence for under five years, and people are just beginning to find us. And we are being found by people from all over the world, thanks to the really wonderful work that is performed by Jim Lubin. Our web site is being visited by thousands of people from every state in the United States and from countries all over the world. Our membership looks like the United Nations.

Our membership is a community. We are a community represented by a tremendous diversity of cultures and languages. We are men and women and boys and girls. We are of many different races and ethnicities. We come from every walk of life, from every economic class, and from every religious heritage. We are a community because we share a common interest and concern that has become an integral part of all of our lives. It is a common interest that no one else understands quite like we do; that no one else appreciates quite like we do. None of us willingly selected membership in the community, and all would gladly turn in their membership card if given the option. But our membership is a community. A community with a shared history of experiences. A community with a shared language ... girdling effect, AFOs, L'Hermittes Sign, spasticity, Tegratol ... I don't often use this language outside of this community. It is a community with a shared concern, and a shared desire to educate ourselves and each other, to support each other, to encourage each other.

We are a community so long as we are communicating with each other. Communication is the life-blood of our TM community; communication is how we are held together. And that is the reason the newsletter, the TMIC, the directory and the conferences serve such vital functions for our Association. These are our vehicles for communication in our community. I read every message that is posted on the TMIC. I have observed that part of our community grow and flourish over the past two years. The community expands and contracts and expands. New members appear...frightened, confused. Support, encouragement and information begin to flow immediately ... from Jan, Barbara, Gunny, Phil, Maureen, Sharon, Netta, Nora, Jo Ellen .... Bob has at least five or ten new pieces of medical research posted every week. Someone asks for a definition of a medical term; Jim offers a few links to medical sites where you can spend a month reading about that term. The communication goes on day and night, every day... and it goes on between members of a real community.

Deanne and I are contacted by people all the time who are looking for information about doctors, hospitals, and social services. We do not have this information, because it has to be dealt with on the local level. We send everyone a membership directory and we encourage everyone to develop and nurture their local TM community. We are motivated to hold a conference for the Association next summer, because we recognize what that contact means for the development and cohesiveness of our community. We saw what happened, emotionally and socially and psychologically, when a group of people were brought together, for even a short period of time, who share something that no one else in the world shares. Pauline, Maureen, Heather, Paula, Drema, Gunny, Phil, Debbie, Deanne and I will never be the same. The personal meetings accelerate and intensify those bonds in the community.

The newsletter is an important part of our community. And that is why I opened my letter with the apology. I recognize how important this vehicle for communication is for our community, and it is a great concern to me when it is not offered as often as it should be to our members. The communication is vital to our community's existence. Please take every opportunity to engage in this communication. Send me your contributions to the newsletter. If you have a computer, get involved in the TMIC. Use your directory to find other people with TM in your community; get in touch with them and start a local support group -- formal or informal. Volunteer to be a TMA State Representative, or find your State Representative, some time in the near future, and volunteer to help them. Come to the TMA conference next summer. These are all ways to communicate and to foster a more vital TM community.

I have taken the opportunity to add editorial comments in several of the articles. I have identified these comments by putting them in italics. The purpose is to provide context or to offer additional information. If you asked Pauline, she would tell you it comes from my inability not to have the last word -- even in the newsletter!

We hope you have had a good, safe and healthy summer. Take good care of yourselves and each other.

Letter from the President

Welcome TMA Members,

For those of you who are new to The Transverse Myelitis Association and our newsletter, a recap of our history may be useful. In 1991 my daughter, then 18 months old, was diagnosed with Transverse Myelitis and like so many others among us, our family experienced many changes and losses without much information and support. In 1994, I sought to find others with the diagnosis through the assistance of NORD (National Organization of Rare Disorders) and to develop some kind of support organization. Through this process, I met Sandy Siegel (our newsletter editor & VP, and so much more), who also encountered this uncommon condition when Pauline was diagnosed with TM four years ago. Pauline and Sandy had received my initial letter and questionnaire; the survey was designed to solicit information from people regarding the services they would like to receive from an association. Gratefully, Sandy contacted me to offer his assistance after which we began the tedious process of becoming a 501(c)(3) non-profit organization, locating a wonderful board of directors, developing a professional initial contact packet, designing a brochure, and directly responding to questions and concerns from people with TM and their family members via the telephone and e-mail. Our web site and TMIC (Transverse Myelitis Internet Club) were developed and are maintained by Jim Lubin, the TMA's Internet and Web Site Director. While there remains a tremendous amount of work to be done, the Association has accomplished many of the goals we had set for ourselves at our inception.

More recently, our Association took another huge step when several TMA members and the Board of Directors met in Columbus, Ohio at a joint conference with the FOP Association and representatives of NORD. While our numbers at the conference were small, the impact of meeting and spending time with others with TM (and their families) was one of the most moving experiences imaginable. The informational resources shared, the life-long friendships made, and the growing ability to cope and even laugh at our circumstances made this a memorable time. It was also a time during which we worked, worked and worked. We planned future TMA goals, brainstormed about funding approaches, reviewed organization by-laws, and met with professionals from other advocacy groups, as well as health care providers. The Board also met with Dr. Joanne Lynn during the conference. Dr. Lynn, a neurologist at The Ohio State University, has assisted the Association in many important ways. At the meeting, she offered the Board significant direction for designing approaches to communicate with and establish working relationships with the medical and health care community. The conference offered us a tremendous learning opportunity, and we are most grateful to The International FOP Association, NORD, and particularly to Sharon Neumann and Dr. Charles Levy, who made this conference possible and who invited the TMA to attend. With our Board of Directors located all over the United States, our planning and organizing communications are all of the long-distance variety. The ability to have two full days of face-to-face meetings offered the Board an invaluable opportunity to make progress on our Association's development.

One of the more exciting results of the conference was the Board's decision to plan a TMA conference in mid-August of 1999 in Tacoma/Seattle, Washington. We observed and experienced the benefits those with TM and FOP derived from their participation in the conference and wanted to make this opportunity available to all of the members in our Association. I am convinced that each of you who attend will find your life positively changed and enriched by the resources shared, information learned, and so importantly, the friendships and support you will gain. We hope that you will be able to join us in Washington next summer. The time, energy and expense of putting together a conference are considerable. The Association will pursue this endeavor only if our membership communicates that you are interested in having us do so. We would require more than 30 individuals or their families to commit to attending the conference for us to continue this process. Please let us know if you plan to attend the TMA conference by filling out and returning the form we have included in this newsletter. In addition, the Board is trying to locate funding to assist with the expenses of putting on such a conference. Without major funding support, the Association will not be able to finance the conference. If anyone is aware of potential sources or ideas for funding (i.e., grants, donations, sponsorships), please contact me or Sandy.

More specifics regarding the conference will be forthcoming. We would bring in professionals to make presentations on a variety of subjects, such as pain management, orthotics, and physical therapy. We also need your input to know what topics you would like to have addressed at the conference. You can provide us with this information on the form. Additionally, Paula Lazzeri has posted a message on the TMIC asking that members provide her with ideas about presentation topics. You can send your topics of interest to Paula through the TMIC.

Earlier this year, I received a call from a gentleman whose 21 year old brother had just been diagnosed with TM. He was having difficulty with the diagnosis and with staying positive. I remembered a family that I had spoken to months earlier who lived in the same area. I knew that Kerry and Joan Defilippo would be supportive and would be willing to go the extra mile to help this young man. I called them, explained the situation, and the Defilippo's went immediately to see him. Their visit, support and encouragement were a tremendous help to him. I believe that this personal contact can make a huge difference to any person/family going through the initial diagnosis and adjustments to TM. Hence, this and other similar experiences have helped me to recognize the value of having TMA State Representatives. The idea is that individuals would serve as the state contacts to the Board, would make contact with those diagnosed in their state, and would provide support in any feasible way. There are other important functions which could be performed by the State Representatives. The article in this newsletter that describes the work that Pam Ramsey is performing in Virginia offers additional information about the possible services that may be offered on the state level. If any of you are interested and would like to volunteer, please contact the Association. You may do so by using the form provided in the newsletter. With all of the countries we have members from in the Association, we would also like to have a TMA National Representative for each of the countries. Many of you have indicated an interest in volunteering for work in the Association; we hope that these new and important positions will provide you with that opportunity. The rewards associated with this activity are immeasurable.

The Association continues its effort to look for funding. This is particularly important with our membership rapidly growing and a conference being planned in the near future. Please be aware that funding is critical. Should you know of any potential resources or support for the TMA, please contact Paula Lazzeri, our treasurer, or myself and I will send you any information, such as our tax ID number, that would facilitate the contributions. I also wish to take this opportunity to thank the Claddagh Foundation which recently donated $5,000 to The Transverse Myelitis Association. What a generous and thoughtful gift! This foundation is one supported by friends and family members of Mary Kate Callahan, a child with the TM diagnosis. The Foundation is attempting to impact spinal cord related conditions. Their efforts have helped us meet our publication and mailing costs during the past months. Again, a huge thank you from the Association and all of its members!

My best to all of you. And thank you for your many efforts for the TMA and for the support that you provide to each other. The directory is an effective tool for seeking others for mutual support. Please use it.

Until the next newsletter, take care of yourselves and, if you can, please plan to attend the August 1999 TMA Conference!

Sincerely,

President/Founder