Top Tweets for #TimeIsMuscle
Posting everyday until
@FDA_KyleD @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy
This is Kai and he’s a teenager with Duchenne Muscular Dystrophy, a genetic disease that kills most boys before 25.
His life was improved when he joined a clinical trial for a promising drug called “Deramiocel” from Capricor Therapeutics.
Then that drug’s review process was put on pause by the FDA until the company refiled with the best data ever in treating DMD. Kids had 54% better function at the end of a clinical trial called HOPE-3. Thank goodness, it's finally under review again.
Since 2025, FDA reviewers have rejected 23 rare disease drugs and some believe this was driven by Vinay, but others suggest it's the near-sighted FDA reviewers. Trump finally pushed Vinay out for his inability to do the job the American people demand. So there is hope that treatments for rare diseases may see some light.
Moms of dying kids don't care about the deep state’s "process." They care if their child sees Christmas.
Acting U.S. FDA Commissioner Kyle Diamantas said he wants to reopen approvals for these rare disease drugs.
Here’s hoping he’s serious.
And moves fast.
#CapricorPartner
Posting everyday until
@FDA_KyleD @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy
Posting everyday until
@FDA_KyleD @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy
Posting everyday until
@FDA_KyleD @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS

Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Our Under 14 team, gathered together, to stand side by side as a display of solidarity for their club mate Aaron Langan
#FightForAaron #TimeIsMuscle
Rare disease patients do not have time for acting. We need action. @SecKennedy @POTUS @RonJohnsonWI #timeismuscle
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @DrMakaryFDA @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @DrMakaryFDA @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Day 56
Posting everyday until @DrMakaryFDA @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Day 55
Posting everyday until @DrMakaryFDA @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @DrMakaryFDA @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Day 54
Posting everyday until @DrMakaryFDA @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
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