From the Editor
Sandy Siegel

When a person is diagnosed with TM, ADEM or NMO they and their family begin a journey, which is filled with fear, anxiety, frustration and isolation.  We all know this to be true, because this was our collective experience.  The Transverse Myelitis Association is dedicated to providing a support network to offer the emotional support people need to battle this fear, anxiety, frustration and isolation.  Our state and country support groups form the essential structure of this network.

The Transverse Myelitis Association exists because of the basic goodness of human beings.  There isn’t a single person in the Association who is motivated to do this work because it is their job.  We are all motivated by a desire to reach out to help people in need, to foster a higher quality of life for people and to create a better community and a better world.  This value in Judaism is reflected in the commandment, Tikun Olam, to heal the world.  It is my fundamental belief that human beings are good, and we are all about the need to heal the world.  If I didn’t believe this in the core of my being, I wouldn’t be doing this work. 

These values are shared by the other TMA officers, by the incredible support group leaders we have around the world, by our members who get involved in fundraising and awareness campaigns, by the people who help with our mailings and other administrative work, and by the wonderful medical professionals we have on our advisory board.  All of this work is done by people who want to make a positive difference in their world, in their communities, in their families and for themselves.  The people who benefit most from doing this work are the people who do the work.  The joy of delivering help always exceeds the sense of gratitude felt on the receiving end.

If you are seeking an opportunity to grow from your own adversity; if you are looking for a way to make a difference in your community; if you are seeking an opportunity to heal the world, I have a really excellent offer to make you.  If you live in a state or country that has a support group, please call the support group leader and tell them that you want to help with this important work.   

If you live in a state or country that does not have a support group, we need for you to consider starting one.  I know that people can be overwhelmed by the idea of taking on a leadership role.  How much time will it involve? Will I be able to help people when they contact me? I am so tired most of the time from taking care of myself and/or my family and working, how would I ever have the energy to do this work? 

You can do this!  We don’t have a rigid program that all support group leaders must adhere to.  We are grateful for people’s willingness to volunteer their time and energy and allow great latitude for people to define their level of activity. 

Here are the minimum qualifications and activities that we ask of support group leaders.  You need a computer with internet access at home and you need to check your emails on a regular basis.  You need to be able to communicate in English.  You need common sense and you need to care.  When we get a new member from your state or country, you need to contact them either by phone or email.  Think about the first weeks and months after you received your diagnosis – what would that phone call or email have meant for you!  Whether you meet with your group will depend on many different factors, including travel distances. Some of our groups meet often, some meet once a year, and some do not have meetings at all. Groups have found many effective ways to share information and support. Jim will be able to help you with creative ways to communicate with each other.  You will not be working alone, and other support group leaders will be able to offer you great suggestions. 

There are a number of administrative tasks that will require your assistance.  We will ask you to help us keep your members’ postal, telephone and email information current.  When we have important information to disseminate to our members, we will ask for your help in contacting people in your group.  If your native language is other than English, we will ask for help in communicating with your members.  We will encourage you to help us get important articles translated into your language and to make these available on our web site.  We will ask you to consider helping us with mailing our publications, and if you have the ability, we may ask you to help us by printing our publications locally. 

We need people to volunteer to start support groups in Brazil and India.  Once you take the lead, others will follow. You will not be doing this work alone; others will be willing to help.  We also need someone to start a support group in Canada.  There are people in Canada who have provided us with great help, but as yet, no one has been willing to take the lead to get a group going. We should have a support group in every province. 

There are countries around the globe that have sufficient numbers of our members that support groups could offer great help –Bangladesh, Colombia, Italy, Mexico, Pakistan, the Philippines, Portugal, Spain, and Venezuela. 

I know you can do this work, because I am doing it, and you are no different from me.  I have no special training or education or life experience that prepared me for the most important work I have done in my life.  I just care.  Caring for Pauline motivated me to find ways to make her life better.  Caring for human beings motivated me to find ways to make a positive difference in your life.  That’s all it takes!

If you care and you are ready to heal the world, please write me or call.

Please take good care of yourselves and each other.