As you know, The Transverse Myelitis Association is supported by your tax-deductible contributions. Contributions to the organization are greatly appreciated as they are needed to continue TMA's current level of service and activities, and to enable TMA to increase the scope of services and activities that it provides. There are many ways to financially support the activities of the Association. In addition to sending your contributions directly to the TMA, the United Way program may provide you with a practical alternative method for contributing.

In each of our communities, United Way conducts annual fundraising drives. The United Way program allows participants to identify specific 501(c)(3) organizations to receive their contribution. In some areas this is called the "Donor Voice" program, in others it is called "Specific Care." Your area may even have a different name for this aspect of United Way giving. You can designate The Transverse Myelitis Association as the recipient of your United Way contribution by following these instructions. All you have to do is write the name, address and phone number of our organization (see below) in the appropriate place on your United Way pledge form. Please encourage your friends, relatives and co-workers to consider designating the TMA as well.

The Transverse Myelitis Association received funding as part of United Way's 1997 fundraising campaign. Consequently, the TMA is already identified through United Way of Pierce County, Washington as an organization that can receive United Way funding when you designate the TMA as the recipient of your contribution.

The TMA depends on community support. The TMA community is expansive as it includes each of you, your City or Town, your medical community, your educational institutions, your libraries, and your friends and relatives. Contributions are essential to the continued success and growth of the Association and its programs and services. The Association tries to serve each of you to the best of our ability and to the extent of our finances. Together we can continue the TMA's success story. Please consider supporting the TMA.

All direct contributions to The Transverse Myelitis Association can be sent to Paula Lazzeri, Treasurer (see Treasurer's Financial Report for Paula's address). United Way contributions require the corporate address to be used. When you fill out the United Way form you must include the following information with the TMA designation:

The Transverse Myelitis Association
3548 Tahoma Place West
University Place, WA 98466
+1 (253)565-8156

The TMA Survey Research:
It's Not Too Late to Make Your Valuable Contribution
Sandy Siegel

The TMA began to administer surveys to our members in January, 1997. Our membership at that time was approximately 180 people. Today, we have over 925 members in the Association. The survey represents an attempt to collect, analyze and publish information about Transverse Myelitis, including such issues as the onset of the condition, the treatment of symptoms, and the demographic characteristics of people who are diagnosed with TM. Physicians cannot begin to understand TM without your willingness to share with them information about yourself and your experiences. The TMA has access to more people with TM than any doctor, health care institution or research organization; we are the best source of information on the Transverse Myelitis condition. The more information we are able to report to physicians, the better they will understand TM. With better understanding comes better treatment; we are all the beneficiaries of this information and experience. Given the diversity of experiences that are represented by our members, it is imperative that everyone participate in completing the survey.

If you have not completed and returned the survey, you may get a copy of it by writing to or calling Deanne Gilmur. The survey is also available on our web site. You can download a copy or you can fill it out on-line and send it electronically in your e-mail or internet software. If you have the survey, but have not yet completed it, please take this opportunity to help us help you! Please take the time to complete and return it.

Please follow these instructions when responding to the survey. Most of the survey questions are open-ended. We have provided only minimal space on the questionnaire for your responses. For some of these questions, you are going to need additional paper to provide us with your answers. We urge you to use additional paper and to provide us with as thorough answers to each of the questions as possible. When you use additional paper, please number each of the responses so that they can be properly matched with the appropriate question.

Please answer the questions to the best of your ability. If you have difficulty remembering dates, the specific sequence of events and their durations, medications or any other specific information requested in the survey, please discuss these issues with your families and with your doctors. Attempt to reconstruct events as best as you can. It is important that we collect accurate information. If you are providing us with approximations or with your best recollections, that is fine. Just indicate the level of accuracy of the information in association with the information you provide us. For example, if you are not certain of the exact amount of time you experienced flu symptoms before you contracted TM, please indicate that your answer is an estimation.

If you have difficulty writing or typing, please ask someone to assist you in completing the survey. So long as the responses are properly numbered, you may use whatever paper you would like to complete the survey. Also, if it is easier for you to complete and send the information electronically, please feel free to type your responses and e-mail them to the Association. Please send them to

We greatly appreciate your willingness to provide us with this very personal information. We will publish the results of the survey analysis in future newsletters. If you have any questions or concerns about the survey, please feel free to contact Sandy Siegel or Deanne Gilmur. Please send the responses to:

Sandy Siegel
The Transverse Myelitis Association
1787 Sutter Parkway
Powell, Ohio 43065

TMA Internet Update
Jim Lubin

TMA Home Page: http://www.myelitis.org
TMIC Home Page: http://www.myelitis.org/tmic
TMIC Message Archive: http://www.myelitis.org/tmic/archive
Members' photos: http://www.myelitis.org/tmic/members