Articles from: als-advocacy.blogspot.com

We lost Sandy Morris to the stinking ALS this week. As many of you know, she was a huge influence for the better in...

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  ALS Advocacy

  Hi, I'm Sandy's friend, Cathy... https://t.co/IxjgbVYSzM https://t.co/IxjgbVYSzM - view on twitter

A little over a week ago we got the wonderful news that a drug had been approved for ALS in the US.  Since then...

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  ALS Advocacy

  If ALS organizations had faced the price elephant in the room five years ago, we would be having a completely different discussion today as more treatments emerge. Instead they gave MT carte blanche and here we are. https://t.co/omdXmOt4tB - view on twitter

We sign forms.  We agree to things in order to get treatments, both approved and experimental.  It’s exactly the same thing as signing...

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  ALS Advocacy

  Does it matter who does your genome sequencing? It might when it comes to what happens to your data. https://t.co/VbK94PL5ug - view on twitter

We sign forms.  We agree to things in order to get treatments, both approved and experimental.  It’s exactly the same thing as how we...

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  ALS Advocacy

  What happens to my data next? https://t.co/VbK94PL5ug https://t.co/VbK94PL5ug - view on twitter

Please read about one person with ALS and her experience with a clinical trial, an IRB, the FDA, and a very prominent ALS clinic...

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  ALS Advocacy

  The "ignore and delay and it will go away" tactics need to stop. This is old, but people are still using delay tactics to make ALS issues conveniently disappear. https://t.co/FL9qHwytX8 I'm kind of angry right now in case you hadn't noticed. I'm finished with this doofus. https://t.co/FL9qHwytX8 - view on twitter

Today we wait.  We wait for some therapy developers to do whatever they’re doing.  We wait for regulators to do whatever they’re doing.  We...

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  ALS Advocacy

  Sitting on an Amtrak train, stopped at a station, and now a half hour past departure time. You can't hear the conductor's announcements. And so we sit. It's hard to wait not knowing what's going on. Same thing with FDA approvals -- https://t.co/HSKALHhRnH - view on twitter

Today we wait.  We wait for some therapy developers to do whatever they’re doing.  We wait for regulators to do whatever they’re doing.  We...

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  ALS Advocacy

  Every investigational drug seems to be on a stage with the big black velvet curtain. What's going on back there? Who is on the critical path? What are people doing? https://t.co/7ZJEQGhYsz https://t.co/7ZJEQGhYsz - view on twitter

Today we wait.  We wait for some therapy developers to do whatever they’re doing.  We wait for regulators to do whatever they’re doing.  We...

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  ALS Advocacy

  Airlines (not exactly the paragon of gr8 customer service) have figured out that in delay situations, people deserve to know what's going on. In ALS Land, we need to same basic (very basic) transparency. It's missing today! https://t.co/7ZJEQGhYsz - view on twitter

Today we wait.  We wait for some therapy developers to do whatever they’re doing.  We wait for regulators to do whatever they’re doing.  We...

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  ALS Advocacy

  What's going on? What's not going on? Anybody back there? https://t.co/HSKALHhRnH https://t.co/HSKALHhRnH - view on twitter