A potential treatment...

[Janeyl]

My late husband participated in Phase 2 trials for this potential medication, so I am delighted to hear that it has the green light to proceed to the next stage. But, oh, it takes forever to bring a drug to market. I used to work for GSK and J&J. Still, this is the closest we have come in the 4+ years I have been around MSA!

markets.businessinsider.com...

[Yanno]

Hello Jane. I read about this just a short while ago when Jane H put it on the Facebook page. When I think I'm just about getting to grips with all the medical terms, I read a paper like this and am totally lost....again!

Did you find it satisfying to be part of the trial or was it frustrating that the progress was so slow?

Take care, Ian

[Janeyl in reply to Yanno]

Hi, Yanno! Sorry to be confusing - on Facebook I am Jane Hey, because that was my name when FB started in 2003. The old MSA Trust forum required a user name, by which time I had become Mrs L (or janeyl). It would have been our 7th wedding anniversary this week, although we had enjoyed a number of years living in sin! I am one and the same person, though - honest...

To answer your serious question: Chris was (in the absence of any hope of treatment, let alone cure) keen to do what he could for those who would come after. It was at least something positive he could do. I was merely the taxi driver!

He undertook it knowing that he wouldn’t benefit from the results, but got some satisfaction from being “a lab rat”.

Given that it often required us to be at the John Radcliffe or the Hammersmith Hospitals at stupid o’clock, it did at least stop me oversleeping...

The JR research team were lovely and we felt part of their team, and they kind of supported us.

So it was one of the few positives of MSA and when Chris died, very suddenly, there was just...a vacuum.

Long answer to your question: it takes years and $millions to bring a new pharma drug to market. In the case of MSA, where there is no current treatment, Chris was wasn’t too fussed about the timeline, but participated for the sake of those who followed him.

[Yanno in reply to Janeyl]

Hello to both Janes! I checked the members list and saw a Jane Hey - didn't realise therefore the link of 'Janely' to you!!

I fully understand Chris's desire to help others - Jackie has joined the Longitudinal Prospect Study at JR for the same reason.

Jackie and I try to be as positive as possible and try to do as much as we can. I know at some time there will be ...a vacuum...I suspect I try not to think too much about that albeit I know it's always there.

Take care, Ian

[janehey in reply to Yanno]

Yes, Chris blobbed his data into the Prospect Study too - it all helps.

[Suze81]

Hi Jane! Where can I read about this please? Is it on the trust website?

[Janeyl in reply to Suze81]

This is the trial my husband participated in:

clinicaltrials.gov/ct2/show...

I don’t think the MSA Trust have anything on it.

Try googling “AZD3241”