Strategic Planning Meeting in Seattle

The Transverse Myelitis Association held its first strategic planning meeting on Thursday, July 17 through Saturday, July 19, 2003 in Seattle, Washington. This was the first time in the history of the Association that the TMA board, the TMA Medical Advisory Board, physicians from the TM Consortium and support group leaders from across the country gathered to discuss and plan the future activities and goals surrounding the support, education and information, medical care, research and advocacy that we offer to the TM community. It was a watershed event for the TMA, for the Johns Hopkins TM Center and for the TM consortium. We believe that the results of this three day session will create far reaching and very significant benefits for the TM community.

As the TMA has limited resources to carry out the many services we offer to our members, it is difficult for the Association to fund an activity such as this planning meeting. The Association would like to thank all of the Medical Advisory Board and consortium physicians, board members, support group leaders and TMA members who funded their own travel and hotel costs from their personal resources. We are so grateful for your generosity! The Association would also like to thank the Chafetz-Hampton and the Lazzeri families for holding fundraisers that covered the costs of this important event. Finally, we would like to thank UROMED for the generous grant which helped us with some of the costs of the meeting. This meeting was also made possible by the hard work of Paula Lazzeri who devoted much time and effort in making all of the meeting arrangements. Thank you, Paula! We would also like to thank Debbie Capen for all of the work she put into planning and organizing the meeting, and for the hours of transcribing she is engaged in to prepare the formal report of this meeting. And thanks to Paula's family for transporting the crowd for the wonderful pizza party on Wednesday night.

Dr. Douglas Kerr and Dr. Adam Kaplin made presentations regarding the most recent research on TM. There were also very important discussions with Dr. Nancy Cutter and Dr. Tim Vollmer from the Barrows Neurological Institute involving future plans for collaborative research with the JHTMC and other physicians in the TM Consortium.

In addition to the very exciting presentations and discussions about research, there were extensive discussions about the expansion and development of support groups around the country and around the world. Other topics covered during the meeting included, the development of a strategic plan for the consortium of medical centers involved in the treatment of TM patients; planning the 2004 Symposium in Baltimore, development of an awareness and education effort for emergency room physicians, general practitioners and pediatricians; the development of a formal referral list of neurologists, physiatrists and urologists who can care for people who have the neuroimmunologic conditions; and the establishment of a children's recreation camp program

One of the most important discussions we engaged in concerned the fundraising efforts of the TMA. After learning about the current research, as well as the collaborative projects that will be conducted this year, there was tremendous enthusiasm for raising the money required to attract more physicians and scientists into the study of TM, recurrent TM, ADEM and Devics. As there is no NIH funding of this research, it became even more obvious to the attendees that we bear a critical obligation to raise the money to keep this research going and to encourage new and long-term projects. In addition to the commitment to raising research funds, the planning discussions increased the urgency of fundraising efforts for the 2004 Symposium. Stephen Miller was asked to head up a committee which will focus on foundation grants and other fundraising efforts.

A symposium planning committee was established which is headed by Dr. Kerr and is composed of physicians from the medical advisory board and TM consortium, as well as TMA members. Dr. Kerr is going to take the lead in developing the program agenda for the symposium.

Meeting for three days to discuss such important issues for our Association was exhilarating, energizing and exhausting. The discussions and the results of the meeting made it apparent to all of us that we need to take the opportunity to do this planning much more often than once a decade. These meetings are difficult to arrange as we are asking people to donate their time and their personal resources in order to participate, but the fact that we had more than 30 people attend should provide our members with some sense of the commitment and dedication that is reflected in our board, medical advisory board, our support group leaders and by our general membership. It was a very humbling experience for me.

To fully appreciate the significance of this event, I need to provide you with some history. The TMA Board of Directors meets once a year to formally conduct business. Our administrative reality is that the officers have virtual and long-distance conversations to conduct the TMA's business every single day. We allow Paula to take a vacation every once in a while, but we do ask her for the email addresses of the family members she is going to be visiting. The Board has a formal meeting once a year to review and adopt minutes, to review and discuss our financial status, and to discuss business that is most effectively handled in a face-to-face meeting. As we pay our own travel expenses, we have linked these meetings to other occasions which bring us together. We have had board meetings the day or night before symposia and workshops, and we even held a board meeting the night before Pauline's and my wedding.

There is no one who puts in more hours or devotes more energy and creativity to the TMA than Jim Lubin. Jim is a tireless advocate for the TM community and is the person most responsible for making our information and support as widely available to the world as it is - and I can attest to just how widely available it is from the phone calls and emails I receive daily from around the world. And yet, while Jim is virtually everywhere, he is rarely able to leave his home due to his dependence on the ventilator. Jim handles his life circumstances with grace, with dignity, with courage and with a very healthy dose of fatalism. I cry about Jim's situation - a lot. I'm trying to be more courageous, Jim. My crying is a bit irritating for Jim.

Jim is the geek's geek. Jim is one with his technology. It is a world that he loves, and thank, G-d, it is a world that has connected him to the rest of the world that we all live in to various degrees. So, Jim is amazingly productive, he is happy, and he is one of the most emotionally healthy people I know. But Jim still doesn't get out of his house. In fact, when Jim came to the first day of the meetings, that was the first time he had been out of his house in more than a year. And that last trip out of the house was to a doctor appointment.

Before the children's workshop last summer, I promised Jim that the next TMA Board meeting would be in Seattle so that he would be able to participate. During the children's workshop a discussion I had with Dr. Kerr grew this board meeting into the strategic planning meeting.

The meeting was incredible. I was really gratified to have so many people attend and to get so much important work accomplished. But the most important aspect of this weekend for me was being able to spend three days in a room with Jim. I loved talking to him, laughing at his incredibly dry sense of humor, watching him eat and touching his hands. It was cosmic. It made me realize, once again, what a special gift the TMA has in Jim - and what a special blessing he is in my life. I'm not shy; I tell this to Jim all the time. He knows I love him. He knows how much he means to me. He knows that he is my hero. But I am way too sappy for Jim, so he doesn't pay much attention to me anymore when I get into my emotional mode. And he regularly delivers his witty remarks about my crying with his very dry sense of humor. Jim is a very funny guy.

At the end of the meetings, everyone took their turns talking to Jim and saying good-bye. I was not the only person overwhelmed with his presence at these meetings. I happened to be with Chitra while she was talking to Jim. And Chitra told Jim that he was her hero. In addition to being really smart and creative and organized and highly motivated, Chitra is a truly beautiful twenty-something. Jim really blushed. Jim was so touched by her words that I've decided that from now on, if I want for Jim to take me seriously, I'm going to hold a photograph of Chitra in front of my face while I'm talking to him.

You are so amazing, Jim. I didn't take a vote, but I know that I was not the only person at the meeting in Seattle who defined the best part of their trip as the time they had to spend with you. It was a great meeting. We have so much important work to do. I feel incredibly confident that we will get it done and we will get it done well - because we have Jim helping us with all of it.

Nancy and Alaa, thank you for getting Jim to the meetings and thank you for taking such good care of Jim during the meetings. You are such good friends to Jim and Joe and Helena. You made a very special weekend possible for Jim and for all of us who were graced by his presence for those three wonderful days.

See photos of some of those who attended the meetings.