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Prime c posted top line results and it was statistically significant. I’m surprised given the size of the study. I thought it was next to impossible to have statistically significant effects in trials of this size Without a really drastic effect. could someone who is more knowledgeable weigh...

Hal, I think everyone is on board and want to do that. We just don’t know enough about the disease yet to stratify people reliably. It’s not that researchers don’t want to do this, they simply have no way to do it right now.

Can someone explain to me how this is a good idea? It seems like the idea is to conditionally approve drugs that fail their trials? I mean, the FDA recently approved 1 drug off of one phase 2 that was barely statistically significant and another drug that failed it’s phase 3 but had great bio...

I’m young with bulbar onset too (got it at 35). My mom moved in with me, my wife and our two daughters. I also had the same mri findings as you. I had one clean emg, and one emg with abnormalities, but it did not show any real LMN damage. I was also diagnosed based mostly on a clinical exam...

Hi guys. Here is another dental handout made by the motor neuron disease association (I think they are in the UK). My dentist liked it.

we did private on my wife’s because of the cost of relyvrio and radicava. It was significantly cheaper than going on Medicare.

Agreed. On the FRS being interpretable depending on who does it. I’m in a clinical trial and they consistently rank me two points higher than my neurologist. They interpret the same two wuestions and my answers differently.

I actually have speech assistant and love it. Can you upload a banked voice there?

For those of us with severely degraded speech but not using an eye gaze, is there any way to use our banked voice to upload it? This seems great, but it’s about four months too late for me to realistically voice bank again.

If you’re considering Chicago for ongoing care, I highly highly recommend Northwestern (though it can be a pain to get the initial appointment). They have the most clinical trials in the anrea and the support from Les Turner is top notch. i Went to a bunch of hospitals after being diagnosed...