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There Are Elephants In The Room - 2 months

Mashup Score:5

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

There Are Elephants In The Room - 4 months

Mashup Score:6

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

  • 1555165037337235456 Profile photo of Madelyn

    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

Ignore And Delay And It Will Go Away - 5 months

Mashup Score:14

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

Open the @#$%^& Curtain - 5 months

Mashup Score:8

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...

  • 1538544370240077824 Profile photo of Madelyn

    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

Open the @#$%^& Curtain - 6 months

Mashup Score:3

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...

Open the @#$%^& Curtain - 6 months

Mashup Score:3

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...

  • 1534073258680672256 Profile photo of Madelyn

    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

Open the @#$%^& Curtain - 6 months

Mashup Score:5

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...