On Thursday morning I flew out from Dublin to Milan and travelled by taxi to the beautiful little town of Bevano, magnificently set between the lakes and the snow filled mountains in the North West of Italy. I was invited to speak at the annual Charcot Conference on Multiple Sclerosis. That in itself was a great honour for me, but more interestingly out of over 30 speakers, I was the only MS patient who was in attendance as guest speaker.
On Thursday night I went out for pizza with a number of medics, researchers and neurologists and the conversation was fascinating. I watched intently as these super intelligent people discussed the latest in MS research, new drug trials and the disease in general. Their enthusiasm and intent was incredible and I got a real sense of calm and confidence as for the first time in my life, I appreciated how hard the medical world are working to improve the daily lives of people like myself.,
On Friday I was due to open the session at 12pm, followed by three of the top neurologists in Europe. I worked out it was a bit of a gamble putting me up but I was very confident I wouldn't let anyone down, and was looking forward to delivering my keynote. I shared my story with the room - over 350 medics, and then went on to raise some issues that the MS Community have and ask other questions that we really would like answers to. After the four of us had spoken we took our seats as a panel and the seminar was opened up to questions from the room. I seemed to be the one the crowd were interested in as I suppose I was the only patient, and I answered all the questions put to me.
I felt a real sense of responsibility for the first time in my life that I was in a very privileged position, able to ask questions of the medical profession and even better, in a position to take the answers back to the MS Community.
What I can say to everyone in the MS community post my trip is that for MS patients - the future would appear to be very bright. I am now extremely optimistic about the future and as one neurologist told me, he thinks they will have a cure for the disease within 10/15 years. I nearly fell of my chair when this chap shared his thoughts with me. There are also a range of new drugs coming out next year, and if they do what the neuros told me, then its fantastic news for MS'ers. I for one am looking forward to the introduction of laquinimod. It is the new tablet coming out hopefully next year that does everything Copaxone does, but is a lot better at fighting against longer term disability - incredible.
I learned also that it can cost over $350m to run a trial for a new drug with 1000 patients. The market for drugs in the world is in the region of $17BN per annum, so its a busy lucrative market and the pharma companies are putting their money where their mouths are, to try and beat this MS problem and improve the lives of us patients.
I appreciate that this news may not be comforting for some who are struggling with MS today. However my own initial thoughts when I got this information this week, was that at least if my children were unfortunate enough to contract MS, based on what is happening in the medicine world, it would appear that they will be in a completely different space regarding managing and beating the condition.... Incredible!!!
