Many of you on this forum will be aware that one of our number, Mark Bostock, passed away peacefully on the 29th of March. His AMN Easier name was bozzer.
Mark was 50, and in the last year had begun to develop the symptoms of the cerebral form of AMN. Having lived with our disease for almost 20 years, he knew what the potential implications were. He had also had to watch his brother die from this form of AMN three or four years ago. Mark was determined not to succumb to this worst form of the disease, and so opted to end his life on his own terms by travelling to Dignitas in Switzerland while he was still able. He was determined to deal with AMN his way and not to let AMN win.
I first met Mark 17 years ago, on the 5th July 2000. He had recently been diagnosed with AMN, and I was, I believe, the first person with the disease that he had managed to find.
We met many times over the years. We became trustees for ALD Life, and Mark served for a number of years as the Board Chairman. He was always active in trying to advance research efforts into the disease, and it was through his efforts that a global network of AMN/ALD charities in the USA, Australia and the UK was established. Mark did all this while holding down a demanding full-time management job in the technology industry. He was always ready with suggestions and solutions for dealing with the day-to-day problems of AMN.
I am glad that I was able to spend two hours with Mark a week before he travelled to Switzerland. We reminisced a little. He was serene and confident that he had chosen the right course of action.
I wanted to let everyone on AMN Easier know about our fellow-traveller. Because this forum now has many members worldwide, not everyone will have known Mark or perhaps be aware of the way AMN can sometimes turn even nastier. No-one knows why this can happen. Some estimates are that it occurs in perhaps 20% of cases. All the more reason for us to hang together and find ways to support each other.
A JustGiving page where you may donate to ALD Life to fund research in Mark’s memory is at justgiving.com/fundraising/... It also has a wonderful picture of Mark that typifies how many of us will remember him.
Chris
