Australia and New Zealand

Logo Australia Spinal Cord Injury Association

Hello to all in the TM Community.  I am Louise Remilton from Brisbane Australia.  I was diagnosed with Transverse Myelitis in December 2004.  My story and experience with TM is probably quite unremarkable amongst those who have had to deal with the disease, however on a personal level the pain, disability and loss of function has, without doubt, been the greatest challenge I have ever faced.  Despite having the continuing unconditional support and love of my family, there was always an overwhelming sense of isolation and fear that I believe is due to the general lack of knowledge and understanding of the condition in the wider community.  A couple of years ago I came across the TMA web-site quite by chance.  Since that time, I have become a member of the TMA and have, at last, found a sense of solidarity that has made a positive and lasting impression on my life.  In May 2010 I attended the Transverse Myelitis Awareness Day in Brisbane and for the first time actually met others with this condition.  I also saw a presentation by Sandy Siegel and Dr. Benjamin Greenberg via video conference which offered an invaluable insight into the disease, the treatment options and the progress of research on TM.

In September this year, I had the great privilege of attending the 2010 Rare Neuroimmunologic Disorders Symposium in Dallas, Texas.  The Symposium combined detailed presentations from a wide range of specialists about all aspects of the disease and the growing awareness and understanding within the medical and research community.  I also had the very special opportunity to meet the dedicated team on the TMA board along with many individual members I had come to know as friends on the TMA message forum. 

I cannot change the impact TM has had on my life, but I would be honoured to be able to make any contribution I can to assist others who face this disorder.  I will never forget the gratitude and sense of relief I experienced when I joined the TMA and have come to know others both here in Australia and overseas who have faced similar challenges.  I truly believe that knowledge, support and understanding by others with TM will help to reduce the fear and isolation that most people experience on initial diagnosis.  This can't help but contribute to improved outcomes when combined with the professional care and treatments offered by the medical community.

I look forward to continuing my association with the TMA and seeing an improved support network here in Australia now that there is a formal connection between the TMA and the Spinal Injuries Association of Australia.

My contact details are by email:  l_remilton@hotmail.com and phone: 0414 254 531

Transverse Myelitis Day for Australia and New Zealand

This year's Transverse Myelitis Day was marked by a special event, held at the Association's Brisbane office. About 20 members joined Association president David Riley, CEO Mark Henley and other staff to take part in a video link with the US-based Transverse Myelitis Association (TMA). TMA President Sandy Siegel, whose wife has TM, talked about the history of the organisation, plans for the future and the upcoming "2010 Rare Neuroimmunologic Disorders Symposium" in Dallas and the Retreat weekend for teens and young adults at Victory Junction Gang Camp in North Carolina.

Dr. Benjamin Greenberg from the University of Texas Southwestern Medical Center offered a presentation on the current state of research in these rare neuroimmunologic disorders.  Guests had an opportunity to engage in a question and answer session and then enjoyed lunch and a chance to share experiences.  Bernice Quinn, the Association's Member Networks Coordinator and organiser of TM Day, said the event was a huge success. "The feedback from those who attended was amazing – it's not often you get the opportunity to hear from a world-renowned expert and be able to ask him questions and also meet with others who have this rare condition," said Bernice. The event was also an occasion to announce the newly-formed partnership between the TMA and the Spinal Injuries Association, which will act as the TMA's affiliate in Australia and New Zealand.  Members who would be interested in attending a regular meeting in Brisbane and/or would like a copy of a DVD of the day's presentation (including footage of Sandy's wife Pauline and her service dog Kazu)  should contact Bernice via bquinn@spinal.com.au or 07 3391 2044.