Support Groups Desperately Needed In Brazil, each Province of Canada, India, and Everywhere Else

This is a call for action: The TMA needs a support group in every state, in every major metropolitan area and in every country where we have a member. Check the support group page on the web site and the membership directory. If you do not have a support group, please volunteer to start a group in your city, state or country.

Okay, so, he calls for action; what gives? He couldn't get Aaron and David to cut the lawn or take out the garbage for the past twenty years, and he thinks he's going to mobilize the development of a worldwide infrastructure for the TMA by his 'call for action.' Hey, as I get older, my doctors continue to incrementally and yet steadily remove every pleasurable activity from my repertoire; please at least leave me my delusions. Thank you.

Local support groups have become a tremendous resource for people with TM and the other neuroimmunologic conditions. The support groups that have formed around the country and around the globe have served to bring a network of emotional connections to people who otherwise would be very isolated in their experiences with these rare conditions. The support groups have also become a great source of information about resources that are available in local communities. These groups exchange information on everything from references to physicians to good places to purchase medical supplies to local social service programs that may assist in purchasing medical equipment. The support groups have also been very actively involved in fundraising and awareness activities. The international organization is never going to be able to provide this level of information to our members. The support groups have become a critical source of local information and support.

People are reticent about getting involved in doing this work, because they are concerned about being overwhelmed with more than they can handle. Please do not be concerned; the work is not overwhelming, and very quickly you will not feel like you are doing work. And here's the big support group secret - the greatest beneficiaries from the support groups are the support group leaders. For every ounce of good you create in the way of helping others, you will be provided with double the good feelings in return. No kidding.

So, what is the job of a support group leader? Well, every support group leader has brought their own personality, talents and experiences to the position, and have created their own specific approach to developing and conducting their support groups. The great benefit for the TMA of the not one-size-fits-all approach has been the generation of lots of creative ideas for providing information and support. And what one person or group does in New York or Ohio or Virginia serves as the source of a new idea or approach that is often adopted by some of the other support groups. The creating and sharing has been one of the more exciting developments for these support groups.

Some of our support groups have started by a person contacting me indicating that they would like to start a support group. Most of the support groups have been initiated by a person calling me and asking me for the support group in their area. My response is usually - there is no support group in your area, but obviously you understand the value of a support group, please let me help you start one. Very few people have declined the offer. And I will tell you, our support group leaders are really incredible people. All of them have TM and are caregivers. They are an extraordinary group of kind and caring and compassionate people. And they do bring so much intelligence and creativity and skill to these positions. And they come from all walks of life and educational backgrounds and cultural backgrounds. I sometimes think about the group of people who have been brought together by this unfortunate circumstance in their lives and how much good has been created from such a bad thing.

The first thing I ask a person to do when starting a support group is to get into their membership directory and find people in their communities or states or countries and get as many people involved as possible. I often know people in their communities and I suggest people for them to call. I encourage them to share the work as quickly as possible. The support group leaders are facilitators and opportunity creators -- everyone should be doing the work. And this way, no one becomes overwhelmed.

The first job for the support group leader is to write an introduction article for the newsletter so that we can announce that there is now a support group available in this area. And we set up a support group page on the TMA web site. Jim Lubin is wonderful to work with in the process of setting up a web site. People have taken many different approaches in setting up their sites and in the types of information and communication opportunities that are offered.

The primary purpose of the support groups is to be available to offer support. This support is offered in phone calls, via email messages and at support group meetings. Support group leaders provide their contact information on their web pages and also in their newsletter articles. I also identify support group leaders in the membership directory. In addition to these contacts, when a new member registers with the TMA, if they indicate that they want to be listed in the membership directory, and if there is a support group in their state or country, I pass their contact information on to the support group leader. They are then contacted by the support group leaders and are offered emotional support, information about the TMA and our web site and information about the local area support group. The best way to learn about all of the various activities that support groups engage in is to review the articles in the newsletters written by the support group leaders and also by reviewing their web sites.

Some of the support groups have designed their own logos and have worked with Jim to set up items on the Cafepress web site. In addition to my many TMA, Reading for Rachel and Children's Workshop items, I am also the proud owner of Ohio and California support group coffee cups and t-shirts. It is a wonderful way to bring awareness to the TMA and TM and also a great way to create a sense of camaraderie among your group members. Logos and support groups … some day, when I really want to wow you with all of the amazingly esoteric stuff I have rattling around in my brain, I'll write an article for the newsletter about totems. Okay, how many of you just thought, I hope he decides to retire first?

Our international support group leaders do a tremendous job of assisting me with translations. If I receive a message from a person in a language other than English, the international team is able to assist me in effectively communicating with the person. I took five years of Spanish and all I know is Hola, Paco, que tal, como estas? Thank goodness, Yvonne and Marina are there to help me communicate with everyone who is not named Paco.

The following are the current requirements for these important leadership positions around the world. You need to be able to listen to people. You need to have compassion and empathy. You need a lot of common sense. You need to know the difference between right and wrong, and then practice what you know. You need a telephone. You need to be able to organize a small meeting. You need a computer with internet access. And you must speak English well enough to understand when I am being sarcastic and are able to comprehend my sense of humor well enough in order to find me absolutely hysterical.

We have relatively large memberships in Canada, India and Brazil, and there are currently no support groups. If you have an interest, please get in touch with me. If you have any concerns about being able to do the work, please get in touch with any of our support group leaders before you contact me. Ask them about the amount of work that is involved and how they handle it. Then please call me or write me an email. We need support group leaders in every province of Canada. We need a support group in India. We need a support group in Brazil. I need a support group leader to alphabetize the Brazilian names for the membership directory. I owe a deep and sincere apology to our Brazilian members for the total mayhem I have created of your names in the directory. Please become a support group leader and help me eradicate the totally embarrassing list I have created of your beautiful names in the directory.

Pam Schechter serves as the support group coordinator. Pam leads the support group in the New York City area. If you ever have any questions or concerns about your support group or starting a support group, please get in touch with Pam. I would recommend communicating with all of the other support group leaders. They can provide you with great information and advice.

Ultimately, I would like for most of the international mailings to be done by the support groups around the world. As we are in more than sixty countries, our postage costs are becoming quite high. Geoff Treglown has done an amazing job of doing the newsletter and directory mailings with assistance from his group. And they do all of the work from electronic materials. I send them the files and they do a beautiful job of translating all of the information onto the different size paper that is used in the UK. Then they do the entire mailing for Europe. Geoff has also forced me to learn which countries are not in Europe. Hey, give me a break; we have people here who think Alaska is a country. Errol White has not only taken care of the newsletter and directory mailings for Australia and New Zealand, he now also handles the membership packet mailings for these countries when we receive new membership registrations. This approach is going to be able to save the TMA a great deal of money. And every dollar we do not spend on postage is a dollar for the research fund!

I have more returned mailings from Brazil than any other country; envelopes returned with a bad address. These new membership packets cost us $5.70 per each mailing. Can I tell you that when one of these returned envelopes appears in my mailbox, it makes me totally nuts - and like I need any help in that area. If there were a support group in Brazil and someone who could assist me with these mailings, I know that we could minimize these returns and cut down on the waste. Hey, I'm trying to run an efficient operation; and I take spending your money very seriously!

Brazil, Canada, India … please get involved. Please help me. Please help those in your community who need the opportunities to meet and to learn and to share. And Massachusetts? What gives? If you live in a state, country or community that does not currently have a support group, please get in touch with me, and I will help you get started in this important role.