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Mashup Score: 0We Have A Santa Claus Problem - Part I - 1 year(s) ago
We have a Santa Claus problem. NIH We read of an NIH that has expertise and exerts leadership in other areas such as cancer or infectious …
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0We Have A Santa Claus Problem - Part I - 1 year(s) ago
We have a Santa Claus problem. NIH We read of an NIH that has expertise and exerts leadership in other areas such as cancer or infectious …
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
We have a Santa Claus problem - Part I https://t.co/hy6UA9YqkR https://t.co/v22GlYEWhh
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Mashup Score: 0Every 90, 85, 80, 75 Minutes - 1 year(s) ago
“Every 90 Minutes” has been a tagline that organizations have used for over a decade to describe how often someone dies from ALS in the US. …
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Proof that change in ALS Land is difficult. "Every 90 minutes" is wrong. And it has been wrong for some time. https://t.co/PRi9mUWHXz
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Mashup Score: 0There Are Elephants In The Room - 2 year(s) ago
A little over a week ago we got the wonderful news that a drug had been approved for ALS in the US. Since then we have had multiple news…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
A trip down memory lane from five years ago. "It's not like Costco where you get your money back if it doesn't work." https://t.co/yK3ivtnLIw
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Mashup Score: 5Hi, I'm Sandy's Friend, Cathy - 2 year(s) ago
We lost Sandy Morris to the stinking ALS this week. As many of you know, she was a huge influence for the better in what we called ALS Land…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Hi, I'm Sandy's friend, Cathy... https://t.co/IxjgbVYSzM https://t.co/2zqNpoCS24
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Mashup Score: 2There Are Elephants In The Room - 2 year(s) ago
A little over a week ago we got the wonderful news that a drug had been approved for ALS in the US. Since then we have had multiple news…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
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
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Mashup Score: 5Sign Here - 2 year(s) ago
We sign forms. We agree to things in order to get treatments, both approved and experimental. It’s exactly the same thing as signing forms…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Does it matter who does your genome sequencing? It might when it comes to what happens to your data. https://t.co/VbK94PL5ug
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Mashup Score: 0Sign Here - 2 year(s) ago
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 sign f…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
What happens to my data next? https://t.co/VbK94PL5ug https://t.co/7BSsb2cKdg
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Mashup Score: 4Ignore And Delay And It Will Go Away - 2 year(s) ago
Please read about one person with ALS and her experience with a clinical trial, an IRB, the FDA, and a very prominent ALS clinic — http:/…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
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/IW8qglIUVv
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Mashup Score: 1Open the @#$%^& Curtain - 2 year(s) ago
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 …
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
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
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You get a grant and you get a grant and you get a grant and ... https://t.co/MwG2CdWE0U https://t.co/uHWab4cSZl