About the TM Society
We are a small UK based charity with over 1000 members whose main aim is to offer support to those who may have, or know someone with, Transverse Myelitis and its associated conditions such as ADEM, Neuro Myelitis Optica (NMO) and others. We are manned by an entirely unpaid voluntary group of people who mostly have TM themselves.
We provide support via Support Group meetings held around the country, and are happy to answer telephone calls from TM patients, their families and friends. We have also held significantly impressive Conferences with world class speakers who are leaders in their field.
We know that TM affects roughly three to four people per million patients seen, so those with the condition may simply never meet anyone else with it and often find that their own GP knows little about it.
We feel it’s very important to make sure that people with the illness are able to meet with and talk to others in the same position since we know that neurological conditions can be extremely isolating.
We are here to help and make sure that all those with TM feel as though they have a friendly ear to listen to them. If there’s anything you would like to know or to discuss, get in touch. We'd love to hear from you.
How we are organised
The TM Society was founded in 2004 and registered with the Charity Commission in 2005. It is governed according to a Constitution adopted by the members, which was also approved by the Charity Commission.
Membership of the TM Society is open to all and there is no charge to become a member. Members include people with TM, family and friends and supporters including medical professionals.
All members are invited to meet for an Annual General Meeting and elect a Committee (Charity Trustees) of up to eight members including a Chairman, Secretary and Treasurer. Committee Members are elected for staggered three-year terms.
The TMS Committee meets approximately ten times per year. The Committee can ‘co-opt’ up to four additional members to join the Committee. The Committee also works closely with Support Group Leaders, Sub-Committees, the TMS Magazine editorial team, Facebook Group leaders and individual members who step forward to organise events and fundraising.
The 2016 TM Society priorities are listed here.
Jean Anthony, Treasurer
Lew Gray, Secretary
I had TM in 1984 at age 37 and was treated at National Hospital, Queens Square, London and received rehab at Wolfson Centre in Wimbledon. I worked with Geoff Treglown to help distribute TMA Newsletters in UK and Europe back in pre-internet days. In 2004, I joined up with Sally Rodohan and Geoff to form UK TM Society and I became Secretary. I handle New Member's welcome packs and other correspondence, and I also manage our Members List and the Neuro-Physio Bursary scheme for members.
At the end of 2004 I became ill and was in hospital for eight days, but I wasn't diagnosed with ADEM until 23rd February 2005. I set up the Southwest Support Group in 2006 - which later moved and became the Bristol Support Group in 2009. I am just getting an Exeter Support Group started and we will have our first meeting this June. I joined the Committee in 2007. I am the administrator for our Facebook page, ‘TMS on Twitter’ and the Facebook ADEM Discussion page.
Sally Rodohan, President (currently Acting Chair)
I contracted TM when I was 12 years old following flu symptoms. I was transferred after one night in a local hospital to Cherry Orchard Hospital in Dublin. It was six weeks later that I was diagnosed, by which time I was paralysed from the neck down. After thirteen months of physiotherapy I was walking with two sticks and was discharged from hospital. I just got on with life as normally as possible and never met or spoke to anyone else with TM for forty years. Then in 2004, I discovered the TMA and started and chaired The London Support Group. Subsequently, Lew Gray and I met with Geoff Treglown (TMA) and formed the UK TMS which I chaired until 2008. When I resigned as Chairperson the committee awarded me the title of President of which I am very proud.