The TMA Newsletters

http://www.myelitis.org/newsletters

If you became a member of the TMA after 1997, you probably have not been mailed all of the TMA Newsletters.  The first newsletter was published in January 1997.  When a person becomes a member of the TMA, one of the items they receive from the Association is the most recently published newsletter.  We do not mail out back issues of the newsletters primarily because it would entail an enormous expense to do so.  Pauline has already observed that our home·s décor already reflects late twentieth century warehouse. 

If you are looking for information about TM, it is important that you read the earlier versions of the newsletter that were published before you became a member.  Jim has posted all of the newsletters on our web site.  He has them posted in a printable format which will save your color cartridge by not printing the color background.  Also, beginning with Volume 4 Issue 2 of the newsletter, the web version includes color graphics and photographs.  I would encourage you to print and read these newsletters, if you have not already done so.

If you do not have internet access, please find a friend or relative who will print the newsletters for you.  Most public libraries around the country have access to the internet and will allow you to do this printing. 

TMA Symposia and Children·s Workshop

http://www.myelitis.org/events.htm

A tremendous amount of information on TM has been made available at the TMA Symposia and Children·s Workshop.  This information is available through the events link.  Clicking on highlights will take you to the program agenda.  The information is organized by presenter throughout each program agenda.  You can review information in a number of formats.  Handouts from the presentations are available in pdf format.  Some of the PowerPoint presentations are available.  Also, there is streaming video of the presentations from the Second International Symposium in Baltimore and from the Children·s and Family Workshop in Columbus.  Jim and I are currently reviewing video from the First International Symposium in Seattle.  We will be posting some of the presentations from this symposium within the next year.  There is an enormous amount of information about TM in these presentations.  If you are searching for information about TM, I strongly urge you to watch these videos. 

The TMIC Archives

 http://www.myelitis.org/tmic

The Transverse Myelitis Internet Club Archives also represent an enormous amount of information about TM.  Jim established the tmic in 1994.  Since its inception, hundreds of people with TM and their caregivers have been participating in this community of information sharing and support.  The site provides a valuable patient perspective on all of the physical, emotional, psychological and social issues which are experienced by children and adults who have TM.  If it could happen to a person with TM, it has been talked about on the tmic. 

Every message that has been posted to the tmic has been archived.  Jim has a search engine set up so that you can do a concept search of the archives.  This archive represents a tremendous resource to our community; one which, I believe is not used to its full potential.  Allow me to provide an example of how I believe you might consider using the archive.  Let·s say your doctor has suggested a particular procedure for you, such as the use of a baclofen pump, and you decide that you would like to think about it before moving forward.  You can enter baclofen pump into the tmic search engine and every message that contains the words baclofen pump will be retrieved from the archive.  Not only can you read what the messages communicate about the pump and people·s experiences with it, you can also identify their email addresses from the messages.  You can then contact these people yourself and ask follow-up questions.  You will get a wide range of opinions about every subject.  Ultimately, you will be a much more informed patient when you discuss these issues with your physician.  

The Johns Hopkins Transverse Myelopathy Center

http://www.myelitis.org/jhtmc

The Johns Hopkins Transverse Myelopathy Center web site provides a great deal of information about TM.  Dr. Kerr has compiled information on the web site about Transverse Myelitis and about the Center.  If you are seeking information about TM, it would be important to read all of the information on the JHTMC site.

NIH TM Fact Sheet

http://www.myelitis.org/nih

The National Institute of Neurological Disorders and Stroke, National Institutes of Health has prepared a fact sheet and brochure with good information about TM (July 2001).  Jim has created a link for the TM Fact Sheet from our web site, as noted above.  The brochure can be ordered on-line from this site; an electronic order form is provided.  You can also call the NINDS Office to order the brochure (NIH Publication No. 01-4841) at (301)496-5751.

disABILITY Information and Resources 

http://www.makoa.org

Jim·s disABILITY Information and Resources site is the most comprehensive collection of information on disability issues that I have found on the internet.  His site covers everything.  If you have not reviewed this site, please do so.  You will not find a more useful collection of information anywhere.  If the subject relates in any way to the resources of interest to a person with TM, you will find it on this site. 

http://www.myelitis.org

Jim has recently made modifications to the TMA web site.  Our web site is a continual work in progress.  Jim is constantly tinkering with it.  The changes are directed at providing people with the most accurate, useful and up-to-date information possible.  Jim is always looking for ways to make it easier to find information and to more easily navigate through our site.  He works tirelessly at trying to automate as many processes as possible.  He has made becoming a member of the TMA a very easy experience for people; even those who have little experience with computers and the internet.  He is always looking for ways to create an electronic form for information we are trying to collect from our members.  He is always on the hunt for newspaper articles or stories on the television about people with TM; he posts this information on the site regularly.  He is on the constant lookout for internet relationships with various companies and organizations which create fundraising opportunities for the TMA.  And he works at making the site look both very professional and really great.  Jim has helped to make the TMA look like an organization with a staff of two hundred people located in a large office building.  I once had a man admire our site and compliment our IT Staff, making it sound as though the site were created and maintained by a group of 20 people.  I laughed and told him that our IT Staff was Jim Lubin.  People find my phone number on the main page of the web site and call me.  They are always surprised to hear that I am talking to them from my kitchen while I·m making dinner.

In the past month, I have received requests for help from people with TM from Panama, Jamaica, Pakistan, England, Denmark, Italy, Brazil, Australia, Germany and from all across the United States.  And Jim has found ways to have sections of our site translated into eight different languages besides English.  He is currently engaged in a project with Ursula Mauro, our Germany TM Support Group leader, to have the membership form available in German to assist our new German-speaking members.  He is also working on a bulletin board system, in German, for our Germany TM Support Group.

Every time I receive one of these messages, I am reminded of Jim·s hard work and dedication.  No one works harder than Jim to provide information and support to the TM Community.  Jim brings so many talents and gifts to our Association.  We are all so fortunate to have him working for our cause.  I am so truly blessed to have him for a friend.  Thank you, Jim.