The Transverse Myelitis Association is developing a Children's and Family Network Directory that will only be provided to parents of children with TM. The purpose of the Children's and Family Network Directory is to provide a safe means for parents to support other parents and for parents to find other children for their children to communicate with and build friendships/supports with peers. Please note that the Children's and Family Network Directory is still under development and has not yet been published. Our goal is to also publish annual updates to this directory. This directory will only be sent to those TMA members who have registered for and are included in this directory. The Association has been collecting information for the Children's and Family Network Directory for about a year, and we have only received a minimal response. We know there is a need for this information, because it is frequently requested from both parents and children. Please take the time to fill out the response form included in this newsletter in order to be included in the directory.

The Association is collecting information to build a database of neurologist referrals. We asked you to consider whether you would refer your neurologist to other members from your area who have TM. If you would make that referral, we asked you to contact their office and to be sure that they have an open practice and that they would consent to your sharing their name with the Association and other members. We have, thus far, had a minimal response to this request. If you are satisfied with the care you are receiving from your neurologist, please consider taking the time to get permission from them to send us their name, address, and phone number. A referral to a good neurologist, and one who has had some experience with TM, is one of the most frequent requests the Association receives. At this stage, you are our best and only source of information regarding neurologists who treat TM patients. Please help each other out by sending me this very important information. You can send me your neurologist's information by using the response form included in this newsletter.

Would you be willing to donate an hour of your time and 33 cents? That's what it will take you to fill out the TMA survey and return it to me through the mail. If you send it to me electronically, you can save yourself the 33 cents. It is never going to be too late to complete and return this survey. I will continue to enter the information and we will periodically update the analysis and reporting. We currently have almost 2000 members in the TMA and everyone has received this survey. It was sent to you with the first newsletter, or you received it when you were sent the initial packet of information from Dick and Deanne Gilmur. I have only received 402 completed surveys. If you have not completed and returned your survey, please do so as soon as possible. You hold one of the important pieces that will help doctors and researchers solve the Transverse Myelitis puzzle. Please share this information; do so for yourself, for everyone who has TM and for all of those who will develop this condition in the future. It is important for you to take the time to record this information. We will be administering additional surveys in the future. As we begin to develop a greater understanding of TM, we will require the collection of better and more detailed information. For instance, it would be important for us to understand how many people have had recurring episodes of TM, not MS; whether there has been more than one additional episode, what symptoms accompanied each episode and what the time span was between each episode.

I have currently entered over 350 of the surveys. As soon as this process is completed, we will begin to analyze the information. We will report it to you as soon as we have a report completed. And we will find ways to share this information with the doctors who treat you and with the doctors who perform research.

If your survey is currently located so many strata below the piles of paper on the kitchen counter that you would need to hire an archeologist to find it, please contact Deanne for another copy of the survey. She will mail you a survey and the instructions for filling it out. If you have access to the Internet, you can download a copy of the survey from our web page. You can mail me the survey through the postal service or you can send it to me electronically.

You can really make a difference. Help yourself and help everyone else in the TM community. Thank you so much, if you have already sent me the survey. For the rest of you - get busy! Please.

Please mail the completed surveys to:
Sandy Siegel
The Transverse Myelitis Association
1787 Sutter Parkway, Powell, Ohio 43065-8806