German TM Support Group

Hello, my name is Ursula Mauro and I’m the support group leader of the German TM support group; since 2006 a registered society named Myelitis e.V. with 119 members.

Each year we hold two meetings, one in South Germany (about 20 people) and one in North Germany (10-15 people).  My neurologist, Dr. Weiss, always attends the South Germany meetings and answers questions from the members.  It’s good to have such a nice, reliable and qualified neurologist who cares for people with such a rare disease as TM.

As in the past, we have applied for and have received grants from the German insurances.  These funds are being used primarily to translate medical articles about TM/NMO/ADEM/ON into German for the TMA and German Support Group web sites, to help subsidize the hotel cost for our members to attend meetings and to cover the costs of our office materials and postage.  As a support group of the TMA, we share the policy of no membership fees.  As our members do not support our group in the same way that the US members support the TMA, we depend on these funds to cover almost all of our operating costs.  We are grateful to be able to receive this funding and we hope it will remain like this in the future.

Each year I send out two or three small German newsletters to inform people about important news and activities of our society and of the TMA.  It’s easy to find us on the internet, through the insurances, and through support group networks.  Some hospitals and doctors use our leaflets to help us connect to people with these rare disorders in Germany.  I regularly receive calls and emails from people who are searching for help and the translated articles are particularly helpful in this regard.

Since October 2008, we are member of the ACHSE, a German society, which is a network of patient organizations with rare diseases.  The sponsor of this organization is Luise Köhler, the wife of the German Federal President.  ACHSE has 15 people on their scientific advisory board and eight full-time employees.  We are very pleased that we were accepted.  They really do  great work, advocating on behalf of rare diseases, fighting for better possibilities of diagnosis and treatments, and providing us with important information.

I am regularly in contact with Lew Gray from the UK TM Society and Sandy Siegel and Jim Lubin from the TMA.  I am very thankful to work with such great people!

When I started to find people with TM in Germany in 2001 who wanted to get involved in a support group, I wouldn’t have thought it possible that we would become a society and be as active and successful as we are today.  I remember the hardships of the first three years; but I didn’t give up and my patience has paid off.  I want to encourage people to start support groups in their countries, especially in countries which still don’t have TM support groups.  Please feel free to contact me if you have questions about how to get started.

If you live in Germany, Austria or Switzerland, please get involved in our support group.  We want to get everyone involved and are so pleased with the participation of every new member!

Take care.

Ursula Mauro
The Transverse Myelitis Association/German Myelitis Society
1. Vorsitzende Myelitis e.V.
Neugasse 32
77743 Neuried
Telefon: 07807-3154
mailto:ursula.mauro@myelitis.de
http://www.myelitis.de