The purpose of this article is to help others maximize their chances of forming successful support groups with a particular focus on the organization of successful support group meetings. In getting started some thoughtful and thorough planning can contribute to this success. Attention should be given to issues such as meeting time and place, whether to serve refreshments, membership selection, group composition and the goals, expectations and purpose for the support group meeting. The planning should be flexible enough to permit free play for individuality of experience and altered circumstances. For example, we held our first two meetings at a diner strategically and conveniently located at the juncture of a major and accessible highway. Unfortunately, it did not afford complete privacy for members who wished to discuss personal problems that are common to many who have TM, in a candid and open manner. Therefore, we were forced to change our meeting venue to another location. We chose a private room in a restaurant at a large shopping mall.

Pre-planning must encompass the capacities and needs of the individuals who will attend. For instance, many TM members may require that they be accompanied by a family member, spouse or friend to assist them. The chosen location should always be handicap accessible. I got started by planning a ceremony to celebrate the official declaration by the New York State Legislature of "Transverse Myelitis Awareness Day" on June 6th, 1999. Deanne Gilmur, then President of the Transverse Myelitis Association, wrote a start-up letter to members in New York State which I included in the hand-written invitations that I sent out for the first meeting. The letter stated that a luncheon and support group meeting would follow the ceremony. The first meeting was so enthusiastically embraced by the members that I decided to schedule another meeting.

I have Lupus, a chronic auto-immune disease that can attack any part of the body. In my case, I developed an inflammation of the spinal cord, which resulted in Transverse Myelitis. For four years, I have been attending a Lupus support group that meets bi-monthly at a local diner. The Lupus support group has served as a prototype for the one I envisioned for the TM group, because the Lupus group proved to be not only therapeutic, but also a lifeline to rely upon when the disease flared and left me down and depressed. By intentional observation, I became familiar with support groups and how leaders conducted them.

There are many reasons why a member would wish to start a TM support group. Primary among them are the very characteristics of the disease, such as its rarity and neurological deficits that remain after the acute phase. Both of these reasons are compelling enough to ensure attendance. Members wish to gain more information about the disease and also wish to meet others with Transverse Myelitis. The member who starts the group need not be a professional or trained leader of support groups, but one who is deeply committed to the idea of starting a group. For practical reasons and for continuity of purpose, that member should be designated as the nominal leader. He or she should lead in decision making and planning.

The first step in getting started would be to determine the meeting place and time, member selection and group composition. By consulting the 2001 Membership Directory of The Transverse Myelitis Association for names, addresses and phone numbers, the initiator can focus on those members who live within a radius of a centrally located meeting place and, therefore, might be reasonably expected to attend. The leader need not restrict member selection to those who reside in his or her state, but consider members in adjacent states who would be near enough to a meeting location to attend.

I have always favored meeting at a diner or a restaurant because most of them are handicap accessible, do not require a special fee, can accommodate large and small groups, have ample parking space and provide a dinner or a luncheon to those who wish to eat. There are many other options that you may consider, such as town halls, private residences, libraries, etc. However, diners and restaurants are usually available seven days a week and are open through luncheon and dinner hours. Therefore, you can schedule a meeting either in the afternoon or evening.

It is important to call in advance to reserve the meeting location, especially at diners or restaurants, to make sure the room or space is available. Please remember that all decisions a leader makes are subject to modification or change, if necessary. In planning my support group meetings, I have always found it useful to send out invitations to the designated members. The basic content should include meeting time and place, purpose, agenda and topic discussions, directions to the meeting location (if possible), and the telephone number and address of the sponsor for members who have questions about the meeting. Another important step in setting up a group meeting is what I call pre-group contact. After sending out the invitations, I do follow-up calls to appropriate and potential attendees in hopes of securing their participation in the group. This contact can be effective and it often results in additional participants.

Hope Klopchin, who in the past year obtained her Ph.D. in counseling psychology, has been leading our group for two years. Her presence lends professionalism and authenticity and she gets rapt attention from everyone. I would suggest that you inquire at a local college or university where there are social work studies to see if they might offer the services of a fledgling counselor who is working for an M.S.W. or a degree in counseling psychology or another related field. They might be willing to lead the support group meeting in order to gain some experience. As the support group meetings continue, you will notice that there are regular attendees that form the core of the group.

There are many other important issues to discuss about support groups, which I will address in future articles. I would be most grateful to hear from any one who has initiated a support group or wishes to get started. I certainly would welcome their advice and any suggestions they may have. Please write, call or email me at:

Pamela Schechter
41-10 Bowne Street, Apartment 7M
Flushing, New York 11355
(718) 762-8463
pamjam7[AT SIGN]Yahoo.com

My best to you all,
Pam