Support Groups: We Need For You to Get Involved

If you live in Spain, Portugal or France and you have ADEM, NMO, ON or TM, or you are a family member of a person with one of these disorders, we are encouraging you to start a support group in your country.  There is also a long list of states in the United States that do not currently have a support group.  We need for you to get involved!

What is involved in being a support group leader?  The following are the minimum requirements.  You must have a telephone and a computer with internet access, and you have to be willing to post your name, telephone number and email address on our web site under the link support groups so that people from your state or country are able to find you.  The incidence of TM is 1 – 5 in one million.  The incidence of the other disorders is not as well known, but it is likely that the incidence is similar or less.  Your phone will not be ringing off the hook.

When a person signs up for membership in the TMA, Jim sends their membership form to our support group leaders so that they can contact the new member.  Most of these people are recently diagnosed or they are a family member.  Think about your experience; what would it have meant to you if you had received a phone call from someone who understood your disorder shortly after you had been diagnosed! 

We would ask you to be very familiar with the information on our web site and how to navigate around our web site.  Since we do not provide medical advice to people, it is important that we are able to guide people to excellent medical information.  There are numerous articles and presentations available on our web site covering all of the disorders and all of the issues surrounding acute therapies, long-term therapies, restorative therapies and symptom management.  Also, there are numerous ways for people to share information and support on our web site.   

Some of our support groups have meetings; some of them offer support only via the telephone or internet.  This is a very individual decision and, while we encourage meetings, we do not require them.  Over the years, it has been quite evident to me that the people who benefit the most from the support groups are the support group leaders.  Once you have been through such a life-altering experience as receiving an ADEM, NMO, ON or TM diagnosis, or going through this experience with a loved one, there is nothing more transforming as turning this really horrible experience into a positive and beneficial part of your life.  Over the years, I’ve observed this transformation in so many people.  I hope that you can relate to the possibility and are open to starting a support group in your state or country.  If there is already a support group in your state or country, please understand that your support group leader needs and would greatly appreciate your help.  Please get in touch with your support group leader and offer to get involved. 

You can change the world … you can help us to heal the world.

Please consider becoming a support group leader if you live in one of the following states: Alabama, Alaska, Connecticut, Delaware, Hawaii, Indiana, Iowa, Kansas, Louisiana, Mississippi, Missouri, Nebraska, New Mexico, North Dakota, Oregon, Rhode Island, South Dakota, Utah, Vermont, West Virginia, or Wyoming.

Paula Lazzeri is currently identified as the support group leader in Washington.  As the treasurer of the TMA, Paula is already overwhelmed with the work that needs to be performed for our organization.  If you live in Washington, please consider becoming a support group leader. 

All you have to do to become a support group leader is to get in touch with me.  Thank you!
Sandy Siegel
(614)766-1806
(614)352-6765
ssiegel@myelitis.org