NeuroTalk Support Groups - Frustrated on priority with Tasigna/nilotinib

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- Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)

- - Frustrated on priority with Tasigna/nilotinib (https://www.neurotalk.org/parkinson-s-disease/241439-frustrated-priority-tasigna-nilotinib.html)

I'm having trouble getting my arms around this, I really am. First of all,
no one on the planet has any more respect for MJFF than I do, or least
I used to have. And I'm sure everything I've read about this pi**ing
match between GU and MJFF isn't guaranteed to be 100% accurate, and
yes I'm very much aware that there are some incredibly talented people
at MJFF, BUT I feel a slow rage that I'm not sure that I've experienced
ever in my life. and of course, that is the last thing that anyone needs
with tremor (yes, some level of tremor even after DBS).

To MJFF and the like, DO NOT take the American populace and various
philanthropy organizations for granted. And I don't want to see headlines
on your web sites bragging about all your wonderful research that may or
may not position us to apply for a trial in 5 years as I struggle to shave,
shower, urinate, dress, speak, and pray that my spouse doesn't give up
on me.

I've had enough. Either reposition your business model to do a much,
much better job at producing tangible results next year (meaning
products with actual benefit IN the pipeline), exhausting ALL resources
in this incredible country, or do us all a favor and join the hot dog
vendors in front of your posh offices and be content to make less than
10K a year.

First-in-human assessment of PRX002, an anti-α-synuclein

Quote:

Originally Posted by ashleyk (Post 1230290)

Just found this on ******* (correction). Know nothing about PRX002.

First-in-human assessment of PRX��2, an anti-α-synuclein monoclonal antibody, in healthy volunteers. - PubMed - NCBI

Ashleyk, we've had multiple conversations about PRX002 on this board. It's the vaccine that Prothena is working on. If you a run a search for "prothena", you will find many posts with a lot of information.

Not sure if this was posted before, but this was a good story about how the MJFF mishandled this with GU:

Parkinson's disease study caught in feud involving Fox Foundation

And a response from the MJFF CEO on this matter:

Fox Foundation committed to moving rapidly and carefully on Parkinson’s drug trial - The Boston Globe

Quote:

Originally Posted by curem (Post 1230343)

You can't always believe what you read in the press. Rarely do they get the full story accurately. In any case, that's all history which can't be changed. I think whats really important now is that all three Nilotinib trials (GU. MJFF et al, and Inhibikase) are scheduled to begin in 2017. Given the total sample size will be quite large when looking across all three studies, we should get a good feel for how effective the drug is (or isn't) in improving symptoms and slowing progression.