From the Editor
Sandy Siegel

I hope that you are all doing well.  I am thrilled to reintroduce the TMA Newsletter.  I published something that looked like a newsletter in 1997.  Since then, it grew and evolved into something more substantial.  Hence, in the January publication (which was mailed in April), the TMA newsletter became the inaugural TMA Journal.  Well, we are now back to something that looks like a newsletter.  With the shorter format and with mailing help from the Ohio TM Support Group, we are hoping that we can use the TMA Newsletter to communicate more frequently with our members. 

Leslie Cerio, Stephen Miller and Shannon O’Keefe made a visit to the Victory Junction Gang Camp in March.  Our Kid’s Camp Planning Team toured the facilities, learned about the programs and had meetings with the VJGC Directors and Staff.  The planning efforts for the Young Adult Retreat Weekend in November 2006 and the Kids and Family Camp in August 2007 are moving forward.  The 2006 Rare Neuroimmunologic Disorders Symposium is rapidly approaching.  We have been working with Chitra Krishnan from the Johns Hopkins TM Center and Project RESTORE to plan and prepare for the symposium.  The program agendas for both the science and clinical programs are exceptional.  We hope that many of you will be able to make it to Baltimore this July. 

Leslie Cerio, Pauline and I had a wonderful meeting with Art Mellor in April in Boston.  We had an interesting, thoughtful and detailed discussion about the work of the Accelerated Cure Project and the important partnership between ACP and the TMA.  Stephen has been working to grow our support groups around the world; and there are new groups developing all of the time.  If there is no support group in your country, or in your state or in your city, we need for you to volunteer to get one going.  We need for people in Brazil, Canada and India to help us organize your membership and to assist us with the TMA membership database and mailings!

Jim spends every single day doing the work of the TMA.  He is constantly seeking more efficient ways for us to do our work, to improve the effectiveness of our web site and to improve our communications with our members.  Jim recently improved our membership form so that we could collect more accurate information when people sign up for the TMA.  We are in the process of having this form translated into many different languages (Thank you to Ursula, Ulrika, Mette, Roland, Abbas, Val, Marina and everyone else who is contributing to this important effort). 

Debbie, Jim, Stephen, and Paula are in regular communications with our members.  Particularly for people who are newly diagnosed, there are so many requests for information and a great need for emotional support.  We spend many, many hours responding to emails, writing letters and talking to our members on the telephone.  I receive at least twenty emails every week from people seeking information and support, and Pauline and I get at least two or three phone calls every evening. 

There is someone around the world who is receiving a TM, ADEM, NMO, MS and ON diagnosis every single day.  We are glad that these people and their families are finding us.  The work can be emotionally draining, and it is stressful.  People are often seeking guidance about issues that we are not at all in a position to provide.  Some people live in places where medical care is either rudimentary or non-existent.  Or there are people who do not have medical insurance and are, therefore, very limited in the medical care they are able to receive.  We all do the best we can. 

The work is also exhilarating.  There is nothing more energizing than the opportunity to help someone through a most difficult time in their lives.  The people I work with – the TMA officers, our support group leaders, the TMA medical advisory board, the physicians who we work with regularly and refer people to often from medical centers around the country and around the world, the parents who serve as a support network and the many volunteers who participate in fundraising – remind me every single day what goodness there is in the world. 

And all of this work is being done by volunteers.  What an extraordinary group of people!  There are so many opportunities available to join this group of exceptional volunteers.  You will read about some of these opportunities in this newsletter.  You can make such a significant and positive difference in other people’s lives.  Please take this opportunity.  The biggest and the most positive difference will happen for you!

Please take good care of yourself and each other.