Sandy Siegel (left), President of The Siegel Rare Neuroimmune Association, Andrew Hinder, and Chitra Krishnan, Executive Director of The Siegel Rare Neuroimmune Association (right).
Ron Raulerson’s excellent resume, elsewhere on this blog, of the Rare Neuro-Immunologic Disorders Symposium at the University of Texas Southwestern Medical Center Dallas, emphasised what a thoroughly rewarding experience it was for the TM, ADEM, and NMO sufferers in attendance. He mentioned that one of those who attended had travelled from London. I would like to take this opportunity to own up as that sole representative from London, and to stress what a privilege it was to experience the sense of empathy and solidarity amongst those sufferers and carers present. It was the first time I had attended a symposium organised by The Siegel Rare Neuroimmune Association, and as I have suffered from TM since May 2010, my initial thoughts on registering for the event was to wonder whether I could comfortably survive the 9 hour flight to Atlanta with the additional transfer to Dallas. As it turned out I need not have worried, as the journey was well worth it.
My purpose in attending was both personal and collaborative. I took along a number of questions from members of The Transverse Myelitis Society in the UK., and these questions were answered in detail by the panels of experts in attendance. Frankly on occasions, I was flummoxed by the complexity of a few of the issues formally presented, but in dealing with questions posed by attendees, answers were precise, informative, and fully understandable.
I returned to London with a full set of answers to issues such as fatigue in TM, the use of the drug Ampyra, and the length of time required for recovery to take place.
I was particularly encouraged by the message that recovery never stops, and the importance of exercise was emphasised as an essential factor in recovery. I was also interested to hear that the ‘one third, one third, one third’ formula – i.e. one third of people affected with transverse myelitis will recover, one-third will show only fair recovery, and one-third will not recover was called into question and quite possibly inaccurate. Research into new treatments was especially interesting and encouraging, and I took back to London some fascinating insights into the development of new drugs and work on stem cell technology.
There was much to consider and take away from this symposium, but the overall message was one of optimism for new therapies and rehabilitation.
Upon my return to the UK I wrote a short summary of my experience in Dallas. This appears in the November edition of the online magazine for The Transverse Myelitis Society. I will address the questions I took to Dallas on behalf of Transverse Myelitis Society members in the spring edition of this magazine.
Like Ron, I wish to express my sincere thanks to all who made this symposium such a resounding success. Sandy Siegel, President, and Chitra Krishnan, Executive Director of SRNA deserve a special mention, as do Dr Greenberg and indeed all the presenters.
Most of all I thank everyone I met for such a warm and genuine welcome. London to Dallas is a long and arduous trip, but I am waiting for the next symposium with great anticipation, and I hope to meet again with members of the Transverse Myelitis Association who helped to make my long trip so worthwhile.
Please help us support programs like our Symposium and raise awareness for the Transverse Myelitis Association by participating in the Crowdrise Holiday Challenge here!