Introducing the Journal of The Transverse Myelitis Association

It has been my great privilege and responsibility to be the Editor of The Transverse Myelitis Association Newsletter since 1997.  It is a wonderful vehicle for education, awareness, information dissemination and networking.  It is also a means for providing a voice to our members; the In Their Own Words articles are of immeasurable help and comfort to both the writer, as well as to our readers.  The sharing of these stories is heartbreaking, inspiring, informative, reaffirming, depressing, positive, motivating, painful, and hopeful.  They are honest and candid portraits of people’s experiences with these horrible disorders. 

I made a commitment to our membership to publish the newsletter twice a year.  As I have gone two years without meeting this obligation, I have decided to face up to the difficulty of accomplishing this task.  When I made this commitment, the newsletter was actually a newsletter; it was about twenty or thirty pages in length.  We should probably find a better name for our publication, as people are confused when we refer to it as a newsletter.  Pauline and Geoff Treglown (UK TM Society) have been lobbying for a different name for at least the past couple of years.  Each publication seems to grow in size, because the amount of information that needs to be communicated becomes more complex and continues to increase. 

So, one might ask, “Well, Mr. Editor, why not just publish a smaller newsletter or journal or whatever, more than once a year, and simplify this thing a bit for yourself?”  I’m glad you asked; and that leads me to the other difficulties surrounding the frequency of publication: our growing membership, the complexity of the mailing logistics and the costs associated with the printing and mailing. 

The most recently published membership directory took me two months to prepare for mailing.  When I tell you that the time involved was two months, this means that when I was not at work (at the job that pays the bills), or with Pauline and the boys, or doing chores around the house, or responding to TMA emails or phone calls, I was working on the mailing.  That is every single evening and most of the day on the weekends for two months.  Two months is a very long period of time to consume all of the time of the president of The Transverse Myelitis Association.  I committed to publish twice a year when we were less than 1000 members and mostly within the United States and the United Kingdom.  Today, we have grown to almost 6,000 members from across the United States and from more than 80 countries around the world.  The sacks of mail literally fill our garage before they are hauled (by me) to the post office.

The printing costs are high, as are the postage costs, and this is particularly the case for the international mailing.  The directory postage was $1,701.99 to mail to 3,592 members within the United States.  This is possible because I presort the mailing and get the bulk not-for-profit rate (ergo two months of work).  The international postage was approximately $4,643.35 to mail to 1,167 members.  These are significant costs for an Association that does not charge membership fees to any of our members.  The UK TM Society was established, in part, to help us with these international printing and postage costs, as the largest proportion of our international members live in the UK and Europe.  The UK TM Society has been printing and mailing the TMA newsletters to our members in the UK and Europe for the past three years.  If you live anywhere in Europe, you should consider making a donation to the UK TM Society, as your TMA publications will be printed and mailed by this organization.  A similar arrangement is being carried out by Errol White, a support group leader in Australia.  Errol prints the electronic files and does the mailing for Australia and New Zealand.  We need to find volunteers to do both the printing and mailing from countries that have large numbers of members, i.e., Canada, Brazil and India.   As is the case with the UK TM Society, it would also be a major help if international support groups could do more of their own fundraising to assist with covering their costs for printing and mailing these important publications.

So, it is my great pleasure to reintroduce you to the annual publication of the:

Journal of The Transverse Myelitis Association

You might have noticed that this version of the Journal is numbered Volume 1.  I will no longer use issue numbers.  We are hoping that the TM Support Group of Ohio is able to assume much of the mailing preparation process, and if they do so, I will try to publish a TMA Newsletter twice a year, in addition to the Journal.  The Newsletter would focus on providing information about the TMA and our support group network, making announcements about upcoming events, such as symposia and kid’s camps, and reporting information that is of immediate interest or concern, such as, we hope, the recruiting for clinical trials.  The Newsletter numbering will maintain the current system; thus, the next TMA Newsletter would be numbered Volume 6 Issue 2.  Does this matter to anyone besides me?  Wow, it must have been a really rigorous toilet training; glad I don’t remember it.

It has been a great source of personal frustration that I have not been able to publish the newsletter more often.  I know how important our connections are with all of you.  I am hoping that by soliciting help from the TM Support Group of Ohio and by redefining the structure and purpose of our publications that I can accomplish the important job of communicating with our membership more frequently and more effectively.  In the meantime, your understanding in this matter is greatly appreciated.

Please visit our wonderful web site frequently, as we regularly post new information and important announcements and opportunities.