JB Progress

There is a promising treatment for genetic mutations like mine, called an Antisense Oligo Nucleotide (ASO) . It's a piece of artificial DNA that suppresses the adverse action of a mutated gene.  Two firms in the USA (Ionis and Biogen) have produced an ASO that is designed to tackle the C9orf72 mutation that is the cause of my MND. There are early clinical trials running all over the world, with three centres in the UK: Sheffield, King's College and UCL. With support from the MND Unit at the John Radcliffe, I have been angling to get on one of these trials. I was referred to Kings College, but heard nothing, then recently to the National Hospital for Neurology, part of UCL. Yesterday I received a phone call from the lead investigator for the trial at the National Hospital for Neurology. He would like me to join Cohort 4 in their Phase 1 trial, subject to being assessed against their entry criteria. They are running 6 cohorts with 8 people in eac...

My MND has progressed in subtle ways, causing changes to lifestyle. I found I could no longer get into bed on my own, since as fast as I got one leg on board, the other fell out. More recently, I’ve not been able to get out of bed on my own, either. So Sandie is now helping me at each end of the day, getting in and out of bed and also getting dressed and undressed, as it takes ages to do those things myself, most awkward being to get trousers on. I can still get into and out of my car by myself and drive.