Hi, Just thought I'd post this as I was on a medical trial for MND for 18 months through Mirocals research. This apparently is a slow down progress not a cure. I was diagnosed in Jan 2019 with Progressive Bulbar Palsy and told at the time prognosis could be as little as 6 months rather than years so I joined the trial in March 2019. During the trial I had to have three lumber punches to get spinal fluid samples and then I had 5 consecative injections once a month of a drug that I was told boosts your immune T cell regulators. Apparently in research of people who died of MND they found a major shortage of immune cells. The trial finished in October 2020 and the progress of my MND was quite slow over that time but since it ended my deterioration seems to be speeding up. I have been chasing the company to try and continue the medication on compassionate grounds but no luck so far. The company is French based and I was told in France they have allowed participants to continue on the medication.
So the reason I'm posting this is because I was on the second phase of the trial and they are quite likely to do a third phase of the trial which I wouldn't be eligible for but anyone who is recently diagnosed and would like the opportunity of possibly slowing their progression of this awful disease I suggest you research and chase them which is how I got involved originally, no one referred me I searched it and was taken on. Phase two there were about 200 of us on it so I was told. Not sure if and when Phase 3 will start but I really hope some of you get a chance. One of the main criteria's is you must not have started Riluzole, but once I was accepted onto the trial I was allowed to start Riluzole.
So the reason I'm posting this is because I was on the second phase of the trial and they are quite likely to do a third phase of the trial which I wouldn't be eligible for but anyone who is recently diagnosed and would like the opportunity of possibly slowing their progression of this awful disease I suggest you research and chase them which is how I got involved originally, no one referred me I searched it and was taken on. Phase two there were about 200 of us on it so I was told. Not sure if and when Phase 3 will start but I really hope some of you get a chance. One of the main criteria's is you must not have started Riluzole, but once I was accepted onto the trial I was allowed to start Riluzole.